Tuesday, June 30, 2009
Monday, June 29, 2009
Teaching Her Children Well
In this all-female household, there are no locks on bathroom or bedroom doors. The three of us wander around in various states of undress. I brush my teeth in the buff while my younger daughter, who is 5, sits behind me on the toilet, singing to my rear end. My elder daughter, 8, sticks her head into the shower to ask me about the various “yuck” factors of puberty, about the feminist and anthropological ramifications of shaving my legs, about the real low-down on babies finding their way into their mommies’ bellies.Indeed they are.
I tell my girls that what they are seeing when they see me is a real woman. I show them where their little fists and heels pressed against the skin of my belly when they were inside me. I explain nipples, birthmarks, sex. I shake my booty. They shake theirs. We are absurd. We are lovely.
NAC Loss at San Onofre Makes Headline
The panel of justices ruled Thursday that a policy that allowed nudity at state beaches – the Cahill Policy – is an invalid policy because they said it didn't go through the proper procedures before it was adopted years ago.Still no definitive word on an appeal to the state's Supreme Court, but this looks like a huge loss for the Naturist Action Committee. Allen Baylis suggests that the "remoteness" condition mentioned in a letter to the American Association for Nude Recreation could be the basis for a new argument, but the point could be moot since it's been ruled now that the original Cahill Policy was merely a guideline and not a regulation. This would mean the the state could impose any guideline it chooses on any land considered for nude recreation, such as remoteness, or simply not allow nudity at all, which is officially not allowed on state beaches anyway, according the California Department of Parks and Recreation.
Their decision overturned a lower court's decision in which an Orange County Superior Court judge ruled that the Cahill Policy is indeed a regulation and that state Department of Parks and Recreation violated procedure when they adopted a nudity ban without first seeking public feedback.
The appellate justices heard from two sides of an ensuing battle over Trail 6, which has traditionally been something of a safe haven for naturists.
Park officials said the agency followed the rules and did not violate any policy because they said they never set aside a designated area for nudity. They contend public
nudity is not allowed on state beaches.
Instead, state officials said, they chose to look the other way and allowed public nudity at the beach until they started getting complaints.
It seems to me that the NAC has to decide between continuing the fight over technicalities, or to take the case directly to the public and foment change at the grassroots level.
Politicians, officials and judges generally err on the side of caution. They are often not interested in doing the right thing, but take the politically expedient course that sits best with the general public. In the case of San Onofre, there is the perception that it's the nudity which is the catalyst for the bad behavior which has resulted in complaints, so in order to "solve" the problem the quickest and easiest solution is to ban nudity altogether. This is a mindset that's very hard to change, and legal actions sometimes only further serve to stir things up, and create more complications.
I wish that AANR had backed the NAC in their action, because even if the result was the same, at least nudists and naturists would have presented a united front. As it stands now, the NAC appears to be the troublemaker, while AANR, by taking the compromise route, now appears to the state of California to be the more reasonable organization. AANR wins the public relations battle here.
As I've said before, AANR will claim victory in the short run, but what they have done by appeasing the DPR is set back the free beach movement by years, if not decades. Naturists need to look beyond the spin that AANR is preparing to put on this development.
Even if AANR has a deal, with the state winning this court battle, there is not likely to be any clothing-optional areas in California state parks anytime soon, in my opinion. The DPR has found new power in this ruling and will likely exercise it against nudism and naturism.
Unless AANR and the NAC get on the same page on this issue, the chance for any success is deeply lessened. Dues paying members don't care about the political backbiting and finger-pointing, they just want results, and with this divide both organizations are merely serving their own interests and letting down nudist and naturists everywhere.
Sunday, June 28, 2009
Topfreedom Photos from Comfest
Going Nude in Public? Don't Do It Alone
Cooper said he didn't realize he was near a school and didn't intend for the kids there to see him. "That was my mistake," he said. "I messed up completely."..."People in Ashland seem to be very paranoid about kids," he said. "I think they should all send their kids to a nudist resort or have naked day in Ashland where everyone is naked. Then all of those hang-ups would disappear."In a society so heavily-invested in clothing and body shame, it's not a good idea for one individual to push the envelope on public nudity. Even though Cooper might actually be a sincere nudist and body advocate, his unilateral actions will be perceived by most as kooky, or even perverted.
It's far better to organize groups of people for nude events, such as the World Naked Bike Ride, AANR's skinny-dipping event, or Spencer Tunick's nude photography installations.
When Tunick was taking photos of only a handful of nude people on city streets, he was being arrested. Now that he has thousands of participants, he receives police protection, and is welcomed wherever he goes.
While some cities such as Boulder are still resisting full nudity in the WNBR, the protest event seems to be picking up steam around the world with more and more people participating. This year in London around 1200 riders bared all to being awareness about oil dependency.
And the city of Fremont seems to really love the naked bike riders who kick off the annual Solstice Parade.
After an attempt to exclude nudity from the annual Bay to Breakers run in San Francisco, the numbers of people protesting were so great that organizers backed down and there were more naked people than ever strolling through Golden Gate Park.
Women's topfreedom in Columbus has become a true tradition at the annual Comfest event at a downtown park, and this year I observed more topfree women than ever before. The silly argument that the sight of nude female breasts is somehow harmful to children is debunked in Ohio every year as tons of children frolic in Goodale Park completely oblivious to the women not wearing shirts.
It's going to take more and more mass demonstrations of body freedom before society truly adapts to the idea that exposure of skin is neither shameful nor perverted. It makes me wonder if all the well-intentioned work of the Naturist Action Committee in pursuing legal actions for hot spots such as Huntington Beach and San Onofre Beach in California wouldn't be better directed to organizing protest events to work on public perceptions.
It's logical to assume that a society willing to accept public nudity in downtown parks would embrace nakedness in it's most obvious and natural setting - a beach. What is needed is an army of a thousand people, all nude with body paint and protest signs, marching on San Onofre beach with members of the press in tow. What is needed is a thousand women, all bare breasted, descending unannounced onto a public beach to mingle with the suited multitudes until they blend in.
But going it alone isn't the way to win the hearts and minds of a public which has been ingrained with the notion that nudity is sexual, shameful, forbidden, dangerous, and illegal.
Saturday, June 27, 2009
Topfreedom Thriving in Columbus, Ohio
Friday, June 26, 2009
Court Rules Against Naturists at San Onofre
Following Nudist and Naturist News
Hopefully, you will find that place to be here. I can't report on everything that happens every day, but I do provide several places where all the news comes together quite comprehensively.
First and best is to subscribe to my shared items here. The shared items are a combination of nudist blog posts, nudist news and related subject matter, as well as other news that I find interesting. This feed can also be accessed along the right-hand column of this page under the header "What I'm Reading Today."
If you just want to read the latest blog posts from the best of the nudist and naturist writers, then visit The Naturism Blog which brings them all together in one place.
Finally, you can access the Nudist News section down this page in the right-hand column. Not as complete as the other methods, but a decent snapshot of current events.
Hopefully these features will prove to be helpful in consolidating the latest news from the nudist and naturist worlds.
Thursday, June 25, 2009
Wednesday, June 24, 2009
A glimpse of summer around my house...
I am really loving the summer this year. Even with all the rain, we've have relatively cool evenings until this week, and I love opening the windows wide and listening to the birds singing outside my windows.
And Cutes (my niece's nickname)is doing well. She's had all of chest tubes removed and is slowly being weaned from pain meds, ventilator, etc. Next week, I have will have a Cutes-related giveaway. Stay tuned!!
Have a good weekend all!
Tuesday, June 23, 2009
Adam and Eve 6/23/09
Visualize world peace...
Just a little Photoshop fun. I took one of my recent paintings, and, using a series of filters (which I could never duplicate) this is what happened. Kinda far out and groovy, I think...
I have some exciting art opportunities in the works for the late summer & early fall, but details are still up in the air, so I will refrain from sharing the details for now.
Meanwhile, my niece Avery is back at Status 1A on the heart transplant list. She continues to be weaned from the ventilator and given extra high-calorie feeds to build up her strength. She is still sedated most of each day to give her body time to rest and heal from her most recent procedure (the Berlin heart). Now it's a bittersweet wait for a heart to become available.
"The rumors of my death have been greatly exaggerated"
But due to the many words of encouragement, which have been quite overwhelming and 100% positive, I have decided to remain online by making a fresh start. On The Political Naturist, I will continue to voice my opinion on matters relating to social nudism and naturism.
People seem to have mixed opinions about photos. I think that images of nudism and naturism are important in helping to show people how natural and fun the lifestyle will be, so I have created two new blogs. Adam and Eve will be a collection of photos of nudist couples, and Nudist Photo of the Day and Nudist Men are self-explanatory.
The Naturism Blog is conceived as a central source for all nudist and naturist blogs, and will certainly evolve over time.
So again, many thanks to all for the tremendous support, any blogging effort is pointless without an enthusiastic audience.
Monday, June 22, 2009
Adam and Eve 6/22/09
NAC Bashes AANR
The tempest is based upon AANR's receipt of a letter from Tony Perez, Acting Deputy Director for Park Operations in California, which basically reiterates the 1979 "Cahill policy" which states that nude recreation is allowed in all state parks unless there is a complaint by a private citizen. While the original policy makes no exceptions as to which public lands fall under the rule, apparently the new Perez letter designates "remoteness" as a condition for clothing-optional use.
NAC appears to have a valid point. AANR does not mention the "remoteness" limitation in its "Government Affairs" column in the May 2009 bulletin. Alonzo Stevens, AANR Government Affairs Chair, implies that the Perez letter offers assurance that "the Cahill Policy was not threatened in the state of California, with the exception of San Onofre, because of the litigation." In fact, the exact words in the letter are as follows:
Since 1979 the Cahill Policy has tolerated nude sunbathing in remote state park areas up to the point where a complaint is received from a member of the public. It remains in effect as a practical approach to enforcement of CCR Section 4322 in remote areas.The original Cahill letter makes no mention of "remoteness" as a condition, so this is indeed a new interpretation.
I agree with NAC that the notion of "remoteness" as being a necessary component of a clothing-optional beach is dangerous, because keeping such areas away from populated areas will only further stigmatize nude sunbathing, and will no doubt draw unwanted sexual activity.
The question also seems to be whether of not the Perez letter is official policy. In the case of the 1979 Cahill Policy, a letter was sent to park officials statewide, and I don't see any evidence that the "remoteness" condition has been widely distributed, but its clear that at the very least, Perez considers it to be his policy.
AANR claims that California's Parks and Recreation Department "wishes to partner" with AANR on a "neutral project", whatever that means. This could just be an effort to "appease" the nudist community by offering a remote piece of land for clothing-optional use, and to make the issue go away.
Or, AANR could be playing the fool, cleverly drawn out of the current beach fight by the DPR with the promise of a partnership which will ultimately be reneged upon if and when the state succeeds in banning naturists from San Onofre.
Or, for all you cynics out there, AANR could be deliberately trying to derail the public lands issue in California in order to force more people into private clubs and resorts.
As Abraham Lincoln once said, "a house divided against itself cannot stand." NAC and AANR should be united on this issue, but blind ambition and foolish politics are pitting the two organizations against one another. It's getting ugly, and ultimately members of both organizations stand to lose more than they gain. But who is right on this issue?
NAC claims that AANR is willing to throw San Onofre Beach under the bus in order to further its own agenda. That does appear to be the case.
AANR has sold its soul to the devil on this issue. Since the Court of Appeals is set to issue a ruling soon on the San Onofre case, AANR is betting that the Department of Parks and Recreation will ultimately win, even if it loses in the short run. While the DPR is currently obligated to enforce the Cahill Policy, it will likely attempt to make changes through administrative process, and the "remoteness" condition appears to be their goal.
Clothing optional beaches must be accessible, visible, legal and family-friendly. Banishing nudists and naturists to remote areas only further marginalizes the lifestyle, attracts the perverts and the creeps, and ultimately makes it easier for governments to shut down the activity altogether.
AANR needs to join the NAC in fighting to keep the Cahill Policy in effect as it was originally written in 1979. Anything less is a defeat for nudists and naturists everywhere. In the short run, by siding with the DPR, AANR will no doubt continue to claim victory, especially if an official clothing-optional area is created in a remote area of California. Such a "victory" would be short-sighted and hollow.
You can donate to the NAC here.
Criminalizing Teen Sexting
Again, the stupid argument is made that in order to reign in teen sexuality, it has to be made a crime with legal consequences. Mr. Walsh has the audacity to actually suggest that punishing teens for doing what they learn from society at large is the right thing to do.I believe that there should be a consequence to get kids' attention, but teen stupidity merits a misdemeanor, not a life-ruining felony.
As a nation, we have to rise to the occasion if we want our children to fully understand what sex really means in a young person's life. Sexy videos on TV and racy sites on the Internet tell kids sex is no big deal. Some state officials are teaching them it's criminal in the extreme. If we want them to grow up to be happy, healthy adults we need to give them guidance and clear standards.
No, the real answer here is to decriminalize teen sexting altogether. It shouldn't be a felony, a misdemeanor, or even a "parking ticket" offense. Nobody seems to want to admit that teens are having all sorts of sex. from oral to anal to group, often unprotected, but there is this social hysteria over a few nude photographs. Mr. Walsh wants teens to grow up into "happy, healthy adults", but fails to understand that puberty begins earlier than ever today, and that trying to button up the urge to merge for up to nearly 8 years in hormonal teens is not only idiotic, it's damaging.
Teen stupidity is not the problem here, it's adult stupidity.
Sunday, June 21, 2009
Adam and Eve 6/21/09
Sacha Baron Cohen Dons Nude Suit in Berlin
Embracing Imperfection
The constant parade in magazines, television programs and movies of pumped-up, gravity-defying, perfectly shaped female breasts has set a standard in the mind's eye of some sort of unattainable ideal that has nothing to do with how people really look.Much pressure is placed on women to bounce back after pregnancy, but the reality is there's very little bounce left. Despite what celebrity mums might tout about how they achieved their amazing shape two weeks after delivery, the fact is it's physically impossible.
It's about time we put a stop to unrealistic expectations and just got real. This week I am embracing imperfection.
If you are not a nudist or naturist and have gotten your perception of female breasts from Playboy magazine and pornography films, click here to see a gallery of non-sexual normal breasts.
Whenever a woman practices topfreedom, someone always makes the argument that the sight will be somehow harmful to children. In fact, the opposite is true - children are being harmed by being denied access to the sight of normal, nude human bodies.
TNS Eastern Gathering
14 Year-Old Girl Sued for Exposing Her Breasts
Everybody is apparently a victim here. What is the crime? The girl allegedly exposed her breasts in the club, a violation of state law. Now all parties involved in frantic finger pointing to cover their own asses.
The exposure of a woman's breast, no matter the age of the individual, should never be a crime. Any man with breasts the size of watermelons can walk down the street topfree without fear of criminal charges, yet any woman doing the same on virtually any street in the United States can be arrested, and face the possibility of being forced to register as a sex offender.
This 14 year-old girl has been conditioned by society that her breasts are marketable as sexual objects. The exploitation by her alleged kidnapper is damaging enough without the entire legal system piling on and reinforcing the notion that female breasts are dirty, illegal, and somehow dangerous to society.
The shame should be on Texas and this twisted club owner, and not on the child.
RELATED STORY: Police Raid Ohio Bar, Find 14 Year-Old Topless Performer
Saturday, June 20, 2009
Adam and Eve 6/20/09
Friday, June 19, 2009
Adam and Eve 6/19/09
Thursday, June 18, 2009
Heal...
Heal: 12 x 36, Acrylic & mixed media on deep set canvas
This was a painting I made as a gift for the CICU at Children's Hospital when I last visited. It was late May, but it already seems like ages ago, given all that has happened since then.
I think I may have been hiding a bit behind my sister's "Avery updates" these past few days. I am reluctant to share all the thoughts and emotions that continuously run through my head and heart. It's too close, too much, too fluid. It changes so often that by the time I write something down, it's no longer quite accurate. So instead, I leave you with this confusing jumble of words.
And always, gratitude. For your friendship, thoughts and prayers for my niece and our family.
PS - Avery was awakened very briefly last night -she waved at her mom & dad, wiggled her toes and opened her eyes briefly before falling back into much-needed slumber.
Wednesday, June 17, 2009
Donate life...spread the word
Hi everyone,
Avery had a good night and is having a good day as well.
Her Bi-VAD (Berlin Heart) is doing all the work it needs to. We started her back on some heparin last evening and will start on some aspirin and either plavix or persantine in a few days.
All of this will be to anticoagulate her blood toward preventing clot and fibrin formation in her Berlin Heart.
On occasion - (not infrequently) - the device needs to be "changed out" if clots or fibrin build up occurs. This would NOT require open heart surgery -they would only change out the "pump heads" which are all external - but they would likely do this in the OR if necessary since they removed Avery's mechanical aortic valve.
As for transplant - Avery is currently a "status 7 - inactive status" on the transplant list. This means we are in a temporary "holding pattern" for transplant in order to optimize her some more following her surgery on Monday.
This is very typical and we were told this would be the case following her surgery for a few days - a very temporary period of time.
Basically - if you are a status 1A and active - you need to be completely ready and prepared at any point a heart should become available to go to the OR. If you are not - then this delays precious time to notify other potential recipients - and this is precious time lost for all.
Avery will likely be re-activated by Friday - and she will return to an "active 1A status" -- thus -- keeping the hours" she has accrued on the list prior to going on "status 7/inactive" - so she starts reaccumulating time immediately.
As for how she is doing today -
She is much less "puffy" then she has been since her surgery on Monday - so the diuretics are doing a great job helping her kidneys to get rid of the extra fluid.
We are weaning slowly on her ventilator - which is great - given all the fluid she still has to lose.
Her nurse placed a feeding tube. We will probably start a very small amount of pedialyte to get her belly used to it and then start ramping up the high test calories in a few days.
Finally - we are planning to do a brief "wake up" test today to briefly see how she responds to us.
Dr. Fynn Thompson is very happy with how she has and continues to do.
As we continue on this journey - and hope, pray...and wait...we would like to ask all of you to spread the word about organ donation.
It is something that is rarely talked about - understandibly - not exactly "life of the party chit chat."
But organ donation is an underappreciated issue - especially when it comes to children donating to children! - despite hundreds of kids (and thousands of adults) whose lives can be saved each day.
If we have learned nothing else over these past 5+ years it is that life takes unexpected turns - and despite our best efforts - we have little control over much of it.
The best we can do - is take what we are faced with and do the best we can - hoping that even in the worst of times - we can somehow make a positive difference.
We will never understand why Avery has had to endure so much - but have full faith she will continue to inspire and teach us for many, many years and get back to her "childhood" - because mom and dad need a break before the adolescent years!
We also do not subscribe to the "every thing happens for a reason" gibberish - because no explanation in the world could make sense of what these kids go through.
But since we cannot change the "why's"...we can at least impact the "what and how" and all make a difference!
So today - tomorrow and whenever you have an eager ear to listen - spread the word about organ donation!
Check your drivers license, talk to your children (if they are old enough to understand
We underestimate what our kids can understand - and sometimes in a much clearer and simpler way.
You never know.... your message could save a life someday!!
xoxox
Cheryl and Mike
Tuesday, June 16, 2009
First steps...
Avery came out of the operating room at 11:30pm with her new "Bi-VAD.
Dr. Fynn-Thompson placed both a left and right VAD - so she now has her Berlin Heart pumping her complete pulmonary and cardiac output - another miracle that we have been blessed to receive!
She looks beautiful and is on A LOT of pain medication and sedation - so hopefully - she took our advice and is dreaming of her eventual trip to Disney World, pink elephants and ice cream -- and all other really fun thoughts!!
She has a team of MANY caring for her tonight - it is overwhelming and beyond extraordinary to see the dedication of so many - who stayed with her - WELL beyond their shift in the cardiac OR - led by Dr. Fynn-Thompson who is still here guarding over her and his amazing work!
Avery is stable thanks to the efforts of many and prayers of millions!!
We will send another update tomorrow - but I will end tonights update with the saying in a perfectly beautiful card that we read as Avery's surgical team wheeled her into her room (thanks Bets!! xo)
Only you can create your own path...
when you find it - and set foot on it
step boldly in the direction of what feels right
The first steps can be the hardest
New landscapes
can be astonishingly beautiful.
...Good night sweet beautiful "cutes"
We are ALL here with you - on your new path! xoxo
We love you "to the moon and back"
Cheryl and Mike
Monday, June 15, 2009
T-t-that's All Folks!
Bruchgefahr!
Saturday news...
Hi everyone,
Avery had a stable day on ecmo. Nothing new - which is good.
Her chest x-ray looked even a little better than yesterday - so keep the prayers for clear lungs with low pressures coming!!
She is still on schedule to receive her Left Ventricular Assist Device L-VAD) on Monday.
There is a huge black metal box in the hallway with the word "Bruchgefahr!"
in big red letters.
This means "handle with care" in German.
This box contains the artificial heart pump for Avery.
Of course to hear Mike exclaim this in his best German accent is a whole other experience :)
Mike - who vowed he would NEVER carry a beeper - now has his very own - courtesy of the transplant team! This way - we both can be reached anytime -
when the most important call we will ever receive - comes!
We went out for Chinese tonight and my fortune read:
"you will get what your heart desires"
We sure hope so!!
Keep praying!
Here is to a peaceful night with the exception of our phone ringing.
xoxox
Cheryl and Mike
Sunday news...
"From Hungary...to Ghana...to Avery..."
Hi everyone,
Another nice quiet day in the CICU with Avery.
Her chest x-ray is unchanged (which is good)
She is scheduled as "second case" tomorrow for the operating room - which means she probably will not go for surgery until about 12pm. Dr. Fynn Thompson said he wants to be fully available post operatively to monitor her - so this will free him up for the remainder of the day tomorrow.
She looks beautiful today and when I whispered in her ear and asked if she could hear us talking she knodded "no"....:)She is sporting a princess bun with a big pink bow that says "Bruchgefahr"! all over it in hot pink marker with fancy hearts :))
We will keep you posted.
In the meantime - I have placed a couple of links about Avery's surgeon Dr. Fynn Thompson for you to learn a little more about this amazing man.
http://abcnews.go.com/GMA/story?id=5487217&page=1
http://childrensinghana.typepad.com/childrens_hospital_boston/profile-1.html
xoxo
Cheryl and Mike
Sunday, June 14, 2009
Saturday, June 13, 2009
The latest news about Avery's progress...
"Good Friday"....
(excerpted from my sister's carepage website)
Note: The photo is Avery enjoying the ocean last summer.
Hi everyone,
Avery's chest x-ray this morning had more fluid - so she went to the cath lab today to help decrease her left atrial (upper chamber) pressure that can be causing some of her high lung pressures and fluid (backup)in her lungs.
Dr. Lock dilated the stent between the atria (2 upper chambers) from 7mm up to 10mm.
Our hope is that we can further work on clearing out her lungs over the weekend to place them in the best state possible for her L-VAD (Berlin Heart)on Monday.
Her chest x-ray tonight already looks improved so keep those prayers coming!
Also - as of 2:22pm today - she was officially "Listed" with the UNOS (United Network of Organ Sharing) for a new heart.
She is classified as a status 1a within Region 9 (New England). This includes Ma, RI, NH, Maine, CT, Vt.
Status priority goes from 1A (first priority) to 1B and 2.
As long as Avery is actively listed - she will always be a 1A based on ecmo - or the Berlin Heart.
Children's Hospital is the only pediatric transplant center within the 6 New England states - so she is top priority for this area. While we are not allowed to know who - if anyone - is on the list "before her" - since we have been in the cardiac ICU for months -in the only center that does transplants - we are pretty sure she is in a good spot:)for our region.
Since Avery is O+ - she can only receive a heart from an O+ donor.
This places her at a slight disadvantage if there is a heart that is A, B or AB - HOWEVER -
O+ is the most common blood type - so this balances out her compatibility quotient.
Also - because she can ONLY receive an O+ heart -
if she were waiting among others of the same status (1A) and an O heart became available - she would receive it first- pending the size was appropriate - because she cannot receive any other type.
She can also receive a heart up to a 2,000 mile radius - if she is higher priority than others on the list based on her being on ecmo - or soon to be - the Berlin heart.
As for her right now-
She looks beautiful and is sleeping comfortably.
She was almost wide awake when she came back from the cath lab today - which is somewhat frowned upon - when you are on ecmo - since you do not want to move the cannulas (the tubes in her leg).
She was trying to sit up and put her legs over the bed.
We quickly sedated her and made sure she was comfortable - but not before Dr. Lock stopped in to check on her.
She pointed at him and pointed to the door - basically - throwing him out of the room.
His response:
"It's good to see she still has her senses" :))
Dr. Lock also very kindly offered Mike and I Red Sox/ Yankees tickets for Wed and/or Thursday night.
This was prior to Avery going on to ecmo this week- but such a kind gesture!
We told him we would take a rain check - but thanked him for thinking of us.
(editors note: the "we" in "we told him" was Cheryl)
So - with that said - we will say good night and ask to continue the prayers
"Clear lungs with low pressure" !!
Thank you all xxoxoxox
Cheryl and Mike
"Team Supergirl"
Friday, June 12, 2009
Thursday, June 11, 2009
A New Chapter...
This is a reprint written by Avery's parents, from the carepage website they maintain to keep us all informed...
(and the photos are from a trip last year to the Vineyard. Avery loves to play make-believe, and one of her favorite characters is a bossy, but charming waittress, pictured here.)
Hi everyone,
It has been a very long day and we have plenty of news to share with you.
(This will be a long update, but we hope you have a better understanding of everything by the end of it)
First of all, Avery is back on ECMO bypass. She is ok and will be on it for several days.
How did she get there?
As Cheryl mentioned last night, Avery has been very fragile and weak lately and hasn't been getting better.
Late this morning she took a turn for the worse.
As she was sitting in bed, she went into heart failure. Her nurse Lauren hit the code alert button and the ICU team went into action.
One of the doctors immediately started CPR - and it worked.
In fact, Avery woke up during the compressions and actually tried to push the doctor away.
Once she was stable the decision was made to put her back on bypass. Not so much because it was necessary at that very moment, but because she was certainly going to have another episode again soon - so why risk it?
She is stabile and her heart and lungs are getting the support they need right now.
So what's next?
That's why we're calling this update "A New Chapter."
To make a very long story short, Avery will soon be on the list to get a heart transplant.
After nearly two-and-a-half months of struggling with her coronary arteries, Avery's heart simply can't go any further.
In many ways, it's been a miracle to get five-plus years out of the heart she was born with. We are forever grateful to Dr. Delnido and everyone here at Children's for getting her this far.
When she had her biventricular repair back in December, her coronary arteries were removed and put back as part of the procedure.
They have not been the same since, which came as a surprise to all of us because this had never happened before to any of the other biventricular repair patients.
When she had her first coronary episode on March 22 it was simply the first sign of things to come.
Her condition improved - so much in fact that she was about a day or two away from going home.
That's when the second episode hit and, looking back, she's never fully recovered from it.
Add that to the fact that they will surely keep happening and the decision became very clear - it's time for a new plan.
A heart transplant is her best and only option at this point.
So what does that mean?
It's a complicated process, but here's what we're expecting to happen.
Avery will be on ECMO into next week.
From there she will be taken to the operating room (exact day not decided yet) and she will be connected to a VAD (Ventricular Assist Device)
The VAD, which they call a "Berlin heart" (that's where it's made, in Germany) is a portable mechanical device that essentially will do the work for her heart and allow her to rehabilitate until a donor heart is found.
How long will it take to find a donor heart?
Here's how her surgeon Dr. Delnido answered that one:
"I've seen it take as little as six hours and as long as a year-and-a-half."
The bottom line - Avery will be here in the hospital for a very long time.
So, while she waits for a new heart, this "Berlin heart" will basically buy us some time. Kids who have been on it in the past (about 20 here at Children's Hospital in the last five years) have been able to come off the respirator, work out with physical therapy, eat, drink, and some have even been able to ride a bike.
So how long do they think she'll be in the hospital?
It's impossible to guess at this point, but of course, we asked.
Because Avery's condition is so fragile she will be moved to the top of the waiting list once she is formally on it (she has to wait for a small infection to go away in a day or two before she can offically enter the list)
We have been told that for a child in her condition the average wait is about two-to-six months.
They will need to find a heart that has the same blood type as Avery (O positive) and one that is about the same size.
When they find a heart that matches, she'll have the surgery.
So, if they find a heart quickly, she will have a long recovery time afterwards, because she will not have had time to build up strength before the surgery.
If it takes a long time to find a match, her recovery time after the surgery would likely be shorter because she would be in better shape for the surgery.
How are you all doing to this point?
It's a lot to digest - but we're getting near the end.
Once Avery gets a new heart, another whole new chapter will begin that will surely have ups and downs that we can't begin to think about right now.
None of this will be easy - it will be a very, very long road.
Please keep the prayers and support coming!
They've helped us get this far - and we are all very grateful!
As always - Thank You!
Mike, Cheryl and Avery
Wednesday, June 10, 2009
More miracles please...
This was Avery on Valentines Day of this year, in between her two very long stays in the hospital. She is back on ECMO now, which is just buying her time until she (hopefully) can get a new heart. Her amazing little heart has done all it can and can no longer work on its own.
I just want all of you who visit my blog to know how grateful I am for your kind words, thoughts, prayers and insights for Avery and our family. I know that we are blessed, every minute of every day, and I do not take it for granted.
Tuesday, June 9, 2009
Miracles happen...
10 x 10 acrylic and mixed media painting on deep set canvas.
My apologies for dropping off the blog-o-sphere for awhile. The warmer months (though they've not been terribly warm so far) bring with them a lot of outdoor chores and activities that consume time I might otherwise spend blogging or painting, or doing any other number of essentially indoor activities.
I finished this painting last night while waiting for a call from my mom about Avery. She needs a miracle these days my friends. In spite of her absolutely fierce determination, which is evidenced daily by her expressions and gestures, she continues to have a tough fight ahead of her. I hope to know more tomorrow, but a heart transplant may be her next hurdle.
Please continue to keep Avery in your hearts, minds and prayers along with her parents and the medical team who are working so hard to get her home and back to a normal little girl's life.
Monday, June 8, 2009
Sunday, June 7, 2009
Saturday, June 6, 2009
Friday, June 5, 2009
What Not to Wear
Wednesday, June 3, 2009
Topless Coffee Shop in Maine Destroyed by Fire
Tuesday, June 2, 2009
Abuse of Human Rights by Kelantan Royal Family
I fear for Manohara.
In the near future, she could easily end up like the Mongolian model Altantuya - disappeared, her body blown into pieces in some Kelantan jungle, never to be found. The killing would be witnessed by the Sultan of Kelantan and his family.
These are things that had happened, is happening, and will continue to happen in scandalous Malaysia.
Teen model escapes 'abusive' Malaysian prince
JAKARTA (AFP) — A teenage US-Indonesian model has returned to her family in Indonesia with tales of abuse, rape and torture at the hands of a Malaysian prince, after her dramatic escape with the help of Singapore police.
Manohara Odelia Pinot, 17, told reporters she was treated like a sex slave after her marriage to Tengku Temenggong Mohammad Fakhry, the prince of Malaysia's Kelantan state, last year.
Her mother, Daisy Fajarina, said she would press charges against the 31-year-old prince, and blamed the Malaysian and Indonesian governments for trying to cover up the alleged abuse.
"The things I've been afraid of were revealed to be true. Manohara has suffered physical abuse. She's got several razor cuts on her chest," Fajarina told AFP on Monday.
"No parent could be silent if their child was treated in such a barbaric way."
The Malaysian government had ignored her pleas for access to her daughter and had blocked her from entering the country, she said, while the Indonesian embassy had said that Manohara was fine with her new husband.
But the young woman -- a well-known socialite in Jakarta -- said her life at the royal palace involved a "daily routine" of rape, abuse, torture and occasional drug injections that made her vomit blood.
She said she was usually held under guard in her bedroom at the palace and was injected with tranquilisers whenever she complained.
"I am still traumatised by all that happened and it has left an impact on me," she told reporters in Jakarta on Sunday, after escaping the royal family during a trip to Singapore over the weekend.
"Sexual abuse and sexual harassment were like a daily routine for me, and he did that every time I did not want to have sexual intercourse," she was quoted as saying in The Jakarta Globe.
"I could never think a normal man could do such things," she said, adding: "Some parts of my body were cut by a razor."
The teenager whose fairy-tale wedding to a prince captured the imagination of Indonesia said she would be tortured if she did not appear to be happy when she attended social functions with Fakhry.
"Every time I went for events they forced me to smile and would torture me if I did not do what they said," she told the press conference.
She said she secretly called Singaporean police and pleaded for help after the royal family took her to the city state when they accompanied Fakhry's father, Sultan Ismail Petra Shah II, for medical treatment.
"The police told Fakhry that he would be held in jail if he did not let me go. No one could force me against my will in Singapore and I knew I had a chance to escape," she said.
The model once voted as being among Indonesia's "100 Precious Women" said she escaped her guards by pushing the Singapore hotel elevator's emergency button.
They were reluctant to chase her because they knew the scene would be captured on security cameras.
She blasted the Indonesian embassy in Malaysia, saying: "They made it worse by telling lies, saying that I was fine while I was suffering in Kelantan."
A spokesman for the Indonesian foreign ministry insisted the embassy had done everything it could to help Manohara and said the government would assist her if she wanted to file charges against her husband.
Malaysian Deputy Prime Minister Muhyiddin Yassin said the government would not investigate the claims.
"I think this is more of a personal matter. To date we have not been dragged into it, so we want to leave it as it is," he told reporters in Kuala Lumpur.
Malaysia's royal rulers used to enjoy immunity from criminal and civil charges but the privilege was removed in 1993.
There has been no comment from the Kelantan royal family.
Manohara's lawyer, Yuri Darmas, said she would have a medical examination to back up her allegations of abuse.
"We need one to two days to gather evidence before we file a lawsuit to the Malaysian police," he said, adding that he intended to pursue both criminal and civil lawsuits against the prince.
Manohara has already filed for divorce, her mother said.
Malaysian leaders and govt is not only complacent, but decadent as well. It is like the end of a dynastic reign, whereby emperors became weak and obssessed with life's pleasures, sex and greed. We are seeing leaders involved in women related scandals - kidnapping, abducting, murdering with bombs and fire-arms.
Police and armed personnel are used, not to fight wars but to kill and silence women and innocent persons who are deemed dangerous to the well-being of our leaders, for knowing too much about their scandals. Malaysia, sad to say, is in almost complete decadence, and the people knew it and want these leaders removed before they destroy the country.
Here is yet another case involving the most useless, scandalous and decadent of people, the royal scumbags of Malaysian sultanates, and it is not just the state of Kelantan. I mean all royal families of all states. Even the rats on the streets have more social benefits than these rascals.
I am pretty sure not many people noticed the presence of Manohara Odelia Pinot, the Indonesian model who had been allegedly kidnapped by her Kelantan Royal Family husband Tengku Muhammad Fakhry (pronounced Fuckery).
This picture of Manohara next to her husband had been published at Anwar Ibrahim’s blog and we were only aware about it after a fellow SOPO blogger Pak Bakaq blogged about his support to Manohara’s team. He was referring to Kelantan vs Selangor FA Cup final match last night April 25, where Kelantan lost 4-1 on penalties.
Sultan Kelantan had however denied that the Indonesian beauty had been kidnapped and that she had been living happily ever after with her princely husband.
A startling allegation recently surfaced in an Indonesian newspaper about a member of the Kelantan royal household, who is said to have 'abducted and abused' his 17-year-old Indonesian model wife (Manohara). According to the Surya newspaper, the family of Manohara Odelia Pinot are now in the dark as to her whereabouts and fear for her safety.
They also claimed that the model, who was named as one of the country's top models by an international magazine, was cut with a razor blade by her husband.Her mother Daisy Fajarina said the royalty had forcefully taken her daughter away in a private jet from Saudi Arabia, where the family had gone to perform the umrah last month.
But here is what her mom got to say about her daughter's ordeal. Mom also revealed that the prince of Kelantan is a sex maniac with strange sex appetite like inverted oral sex, hanging in the air intercourse, etc. All the things that muslim shouldn't do (although I have not checked the Quran on this), what more to a 17 year-old innocent little girl.
More from Indonesia...