Lockdown

Look before you open!

Look before you open!

Lock. Every. Single. Door, Cabinet, and Drawer.

Leave. Nothing. Out.

Decided to take a break from getting the house clean before Gracie’s momma gets home. Been living as a bachelor this weekend (with my 13 year-old autistic daughter in tow). Thought I’d put up a post about what’s been going on lately.

Between Gracie’s pica and elopement issues, it’s a wonder I haven’t had a nervous breakdown. Very difficult to relax whenever Gracie has free reign to roam through the kitchen, family room, and her bedroom. The living room, her sister’s bedroom, and our bedroom are off-limits to Gracie, as those areas haven’t been Gracie-proofed.

Gracie-proofed… that’s cause for some mirthless laughter between Kristine and I. In the past we’ve gone with Gracie to visit the homes of some of our friends and family, with assurances (in their words, not ours) that they have Gracie-proofed their homes in preparation for the visit. Their intentions are good, but I’m sorry, most have no idea of what must be done to secure Gracie’s safety and our peace of mind.

Take the fridge, for example. Just last week Gracie got into the fridge without me noticing. What I did notice is the unnatural quiet that ensued after seeing her leaving the family room. I went to her bedroom to check on her, and found her with a bottle of liquid, chocolate coffee creamer. It was all over her, her bed, and her bedroom floor. So, so aggravating. You don’t realize how sticky that stuff is until you have to clean it up. And I had the fridge doors tied together with a hand towel in a square knot. That little trick worked for a while, until Gracie figured out how to untie the knot.

Before tying the fridge doors together, I kicked around some ideas to keep Gracie from pilfering the fridge. I had seen some off-the-shelf items in the past for securing fridges, but they didn’t look simple or practical enough to work with my fridge. So I went to the hardware store and got the parts and material I thought I’d need to accomplish what I was looking for. I ended up using a two-part epoxy to bond a latch post safety hasp to the tops of the fridge doors. Thought I was so smart, until Kristine forgot to unlock the hasp. Snapped it clean off the door. Yeah, that lasted about all of two days.

So I broke down and bought the off-the-shelf item intended for securing fridges from toddlers (and an always-hungry 13 year-old). Turns out the device works! Although I don’t expect for long. Gracie has attempted to open the fridge a few times, and she’s very strong. I already see fatigue in the plastic parts that lock together, and it’s been less than a week. It doesn’t help that I forget about the lock too, and almost yank the door handle off the fridge when I go to open it.

This morning I was busy drilling holes in some more of our kitchen cabinets to install child locks, lest Gracie get into the bleach, Drano, and dishwasher detergent to mix up some lethal cocktail. Would really rather not have to call Poison Control again. I joke (a little), but seriously, most of the cabinets were already secured. Then she discovered which ones weren’t, and started taking all the items out of those cabinets. Arrrggghhh!!! Stop, Gracie! She thinks it’s funny. Maybe it’s her way of getting attention, who knows?

This morning I also installed a lock on one of her dresser drawers, as recently she had taken all the clothes out of a drawer. I walk into her room to find that she has clothing strewn all over the place. Little stinker! I’m fixing her one cabinet, one drawer, one door at a time.

Last week I dropped fifty bucks on a keyed, exterior door knob to put on Gabby’s bedroom door. Fifty bucks! Because simply turning the original, interior door knob around (so it could be locked from the outside) was no longer sufficient. Gabby had no way of locking the door when she was in her room, and Gracie started dropping in on Gabby. Now Gabby uses a key to get into her room, and can lock the door from the inside when she’s in her room.

A few weeks ago I hit upon the brilliant idea of using slide latches on our bi-fold pantry doors to secure them. I agonized over how I was going to secure these doors. All I had to do was orient a latch vertically and attach it at the top of the door, next to where it folds. The latch pin fits perfectly behind the casing (to lock the door). I had been using a bungee cord to tie the doors together, and keep Gracie from raiding the pantry as well. Three latches on three bi-fold doors later, and the pantry is secured! Booyah! I’m getting good at this, I must say. Had to post signs on the doors, though, to remind ourselves about the latches.

And then there’s the matter of securing the house to keep Gracie from escaping. As mentioned earlier, Gracie has free reign of the kitchen and family room. Most of the time. When Gracie goes to bed we contain her to her room via a baby gate. From her bedroom she has four barriers preventing her from escaping our home via three separate methods of egress, i.e., the front patio door, the backyard fence gate, and the garage door. I won’t bore you with the details, but suffice it to say, Gracie has to get through four barriers to escape our home. She’s managed to make it through three of them at least twice in the past. Once, I opened the garage door after getting home from work, and there she was, standing in the garage. And the other time, after another period of unusual quiet, I went looking for her and found her in the backyard, looking out over our fence, standing next to the gate.

My parents have been after to look into some sort of alarm, one that would let us know if Gracie has escaped. I think I’m going to have to look into that.

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Michigan mother compared to Hitler…

http://player.theplatform.com/p/2E2eJC/nbcNewsOffsite?guid=nc_momdaughtersuicide0906_500kmsnbc_130906

Some people say the most ignorant things… this past summer I recall reading a story about a Michigan mother, Kelli Stapleton, attempting to kill both herself and her severely autistic daughter.  If I remember correctly, the story was in People magazine, or some other sort of periodical.  It was a total puff piece I thought, because the story didn’t do justice to the pain and suffering I know this woman had been through.

Many people were quick to condemn this poor woman, comparing her to Hitler, that she should be tried on hate crime charges, that life is about rising, not coasting (paraphrased from an NBC News story regarding this same incident).  Seriously?  Obviously such people have not a clue what it’s like to be in that situation, 24/7, day after day, 365 days a year, for YEARS.  Many people would crack under such stress, and have.  I believe the stress of being in such situations have been a significant factor in illnesses seen in people we know, including my wife.  It’s true, stress is a killer.

From what I’ve gathered Kelli Stapleton is facing life in prison.  This is so wrong.  She’s already been confined to her own personal hell for the last FIFTEEN years.  Prison will be vacation for her.  This is why there are extenuating circumstances, and why judges have the discretion to mete out punishment as is appropriate to the situation.  I could go on much more about this, but in the interest of keeping my posts brief, I’ll get off of my soapbox for now.

***UPDATE*** Learned that Kelli Stapleton was sentenced to 10-22 years in prison for first degree child abuse.  Too bad nobody intervened when Kelli’s behavior was displaying signs of someone about to go off the rails.  And I am struck with disbelief by the comments people have made about her.  Most of them obviously have never walked a mile in her shoes.

Because of our situation, I’m keenly aware of such stories when they come to light.  In our circle I know of a father who killed himself, unable to face another day in his situation.  When we lived in Ohio a woman in a town close to where we lived shot her autistic daughter, set her house to flames, and then shot herself.  And several times I have wondered about these stories of elopement, i.e., did the child really escape on their own, or did the parents purposely let them escape, with the hope of their child never being found?  I remember a story of two autistic boys wandering from the homes in the middle of a cold winter night, only to be found frozen to death.  Then there was a incident in Ohio where the step-parents of an autistic boy bound him with tape and left him in a closet for the weekend, for a much needed vacation apparently.  Yeah, he died.

I remember being at a pub in Florida one evening (‘Happy Hour’ with my coworkers), seeing a story on TV about an autistic girl being lost in the swamps of Florida.  Everyone around me paid no notice, except me.  I was riveted to the TV, thinking of all the horrible things that could happen to this girl.  Beyond the confines of suburban America, Florida is a very inhospitable place.  She was found covered in mosquito bites, but alive.  A miracle.

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Plutonic mustard

Gracie loves riding in the car!

Gracie loves riding in the car!

I haven’t written a post in a while.  Just haven’t had the will, desire, or energy.  Plus, some people get upset about the things I say.  I thought long and hard about pulling the plug on this blog, but then I decided not to because I want to save the content.  Maybe Gracie’s sister might want to have these stories someday.

If people only knew what goes on inside of my mind, then they probably would be really worried.  I’m sure the same could be said for a lot of us, though.  I realize now that writing about our experiences is an outlet for me.  I’ve so much I want to talk about.  Anyway, here go some more of my ramblings…

Last Friday, Gracie finished her last GcMAF shot.  I think we did 21 shots in all, once a week.  Long story short, the stuff didn’t do a damn thing for her.  $900 down the drain.  That’s out-of-pocket, mind you, cause insurance isn’t paying for that!  Coincidentally enough, Gracie had an appointment with Dr. Udell the same day she received her last shot.

So my mother and I make the two plus hour trip to Davie, FL to see Dr. Udell.  During our visit with the doctor, he tells me about another product that’s supposed to be more effective than GcMAF.  I didn’t catch the name of it, nor did I care enough to ask him to repeat the name of it.  But it’s a $100 cheaper than the GcMAF (so $800), he says.  Then Doc recommended we get a full genetic work-up on Gracie.  That only costs $1,000, I think.  The work-up might tell us what is wrong with Gracie on a molecular level, what chromosome(s) isn’t/aren’t functioning properly.  So we find that out, then what?  Hope and pray Big Pharma comes out with a miracle drug to address my daughter’s specific issue?  Oh, and he mentioned hyperbaric oxygen therapy too.  Almost forgot that one.

I tell Dr. Udell I’m not interested, that I’ve reached the end of my rope, that I’m finally starting to accept things for what they are.  Gracie isn’t getting any better.  Dr. Udell asks me not to give up.  He manages to walk me back from that figurative cliff a little.  I’m not completely done, but I’m almost there.  But for now, I’m not doing the GcMAF alternative (whatever it may be), nor am I getting a genetic work-up done.

Dr. Udell then talks about Gracie’s latest lab tests.  We learned that she’s now at the high end of what’s considered normal for vitamin D (initially, Gracie was vitamin D deficient).  Fortunately I was spotty about giving the vitamin D to her, and had stopped giving it to Gracie when I ran out of the stuff.  Too much vitamin D will make you sick, if you didn’t know that already.

Then Doc gives us the bad news:  Gracie’s blood sugar is too high, and he’s concerned about diabetes.  Says we’re going to need to give her a glucose tolerance test, and tells me all that the test entails.  Suffice it to say administering the test is not going to be fun, especially with someone like Gracie.  And some people wonder why I’m not so chipper all the time…

Near the end of our visit with Dr. Udell we learn about two more supplements called NeuroProtek and mitospectra.  So I agree that we might as well try these too.  We’ve tried just about everything else, it seems.  Do I know how, exactly, they’re supposed to help Gracie?  Not really.  Someday I’ll get around to researching the stuff.  Maybe even as soon as I publish this post.  If any of you are curious, Google it, knock yourself out.  🙂  I leave it in Doc’s hands now.

I can say, however, the NeuroProtek is in a capsule, and consists of a gel-like substance.  Since Gracie cannot swallow pills, I had the pleasure this morning of squeezing the contents out of a capsule into some applesauce.  The stuff is like radioactive mustard!  It stains everything!  I give Gracie a spoonful, Mmmmm, right?  Right away she gags.  Heck, looking at it made me want to gag.  I manage to get her to the bathroom in time for her to vomit all over it, instead of her bedroom.  Happy times!  Forgive my sarcasm, but I’ve a dark sense of humor, it seems.  Was I mad about the mess?  Nah… I was cursing under my breath about the chintzy toilet seat we have in our girls’ bathroom, while cleaning it.  I chuckle at myself, now that I’m thinking back on it.  My younger daughter looks at me funny, wanting to know why I’m seemingly laughing at nothing.  How do you even begin to start that conversation?  “Well, your sister was gagging on Plutonic Mustard, a flavor enhancer for strawberry applesauce, and did you know your toilet seat is broken?”  Guess I better use a higher applesauce to NeuroProtek ratio next time.

It just now hits me, that maybe I should be more worried about Gracie possibly having diabetes.  I mean, sure, I certainly don’t want that to be the case, her having diabetes.  I realize I’m acting the way I do because I’m just numb.  Hard to get worked up about a lot of things these days.  I just take things as they come, and deal with it.

Finally, I just want to say to those people out there in the world, to my family, friends, and caring strangers, I appreciate the support.  And I thank those of you who thought to contribute to our cause.  Although we are no longer pursuing stem cell therapy, the donations we did receive were put towards other therapies, purposes for Gracie.  On the subject of stem cell therapy, Dr. Udell told told us about a family that put their child through six stem cell treatments, at a total cost of $120,000.  The mother claimed her child was doing much better, until Dr. Udell pressed her to be specific.  “How is she doing much better?”  he asks.  “Is she talking?” Dr. Udell asks.  The answer he received?  No.

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Update on Gracie

Hi everyone.  I know, I know, a post on Gracie is long overdue.  So I’ll at least give a quick update on Gracie and the bio-medical intervention we started last year.

Well her nagalese level was twice that of what is considered normal.  This indicates a compromised immune system.  So just over two months ago Dr. Udell started Gracie on GcMAF to normalize Gracie’s immune system function.  We started the dose at .02 CC’s (tiny amount), with .02 CC increases planned after every month.  Dose will eventually get to .1 CC.

GcMAF is incredibly expensive.  It costs $900 for a vial about the size of the first joint on my thumb, and it was all out-of-pocket.  Plus, I had to fill the syringe.  I was praying I wouldn’t drop the glass vial while filling the syringes.  Then I had air in the syringes, and knew that wasn’t a good thing.  So I had to research on the Internet a little to learn how to properly fill syringes to prevent air from being drawn into them, etc.  What a chore all that was, filling the syringes, injecting all the GcMAF back into the vial, and then refilling the syringes properly.

Anyway, Dr. Udell has experienced remarkable results using GcMAF, particularly with teenage autistic girls.  Unfortunately, we’ve yet to see any positive results in Gracie (as far as GcMAF is concerned).

I can say, however, Gracie had an excellent school year this past year.  Overall, her health and disposition has improved significantly.  This is great, because to be honest, I thought I was going to lose my mind last year.

Finally, Kristine has been doing great too.  She returned to work full-time as a kindergarten teacher, and today she meets with her oncologist to receive an update on her prognosis.

Well, until the next time…

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The latest…

Hello everyone.  Sorry, no fancy pics or graphic for this post.  So much has happened in this past year, since starting Gracie’s Autism blog.  Between Kristine’s cancer, Gracie’s illnesses, and Gabrielle’s ear surgery and subsequent battle fighting off ear infections, I really didn’t have the desire to share our issues with the world.  And then there’s life, all the other little problems that come along with it, like having to replace a roof, worrying about my job and the economy, etc., etc.

I cope by trying not to think about the bad things and focusing on what I need to do to get through each day (hence my absence for so long on this blog).  Almost everyday, too, I’m reminded of how others have it so much worse than I.  Not that I take any satisfaction from knowing others who are unfortunate.  I read and hear about other peoples’ tragic stories, and I find myself wishing I had it within my power to help them.  But I can really only help my family, as I think I have enough on my plate.

Anyway, maybe two months ago, my mother and I took Gracie to Dr. Brian Udell in Davie, Florida.  Dr. Udell specializes in treating people with autism.  We left Dr. Udell’s office with instructions to have samples of Gracie’s blood taken, and to collect urine and stool samples.  These are not simple tasks.  After 2-3 trips to medical labs to have Gracie’s blood drawn (not to mention juggling our work and school schedules to accommodate these trips), spooning poop into collection vials (so gross!), and numerous attempts to collect urine, I was so relieved when we were done with all that.

Yesterday we got to learn the results of all the above mentioned labs we had done.  The results didn’t really surprise me, although I was hoping some of my fears wouldn’t be confirmed.  But at least now we know, and can begin addressing these known issues.

Gracie is allergic to gluten (wheat), casein (dairy), soy, and peanuts.  The peanut allergy is not the kind that causes respiratory distress, though.  The level of good bacteria that resides in our gastro-instestinal (GI) tract is low in Gracie, and she has a high amount of yeast (bad).  As a result, her GI tract is moderately to severely inflammed.  Gracie’s vitamin D and cholesterol levels are also very low, keeping her brain and nervous system from functioning properly.

So begins a new phase in our lives, a new dietary, medicine, supplement regimen for Gracie.  We’ll be switching Gracie to a gluten/casein free (GFCF) diet, and giving to her a prescription strength pro-biotic, Diflucan (an anti-fungal for the yeast), and vitamin D (in addition to the glutathione/GSH we already give to Gracie).

By the way, the changes we’ved noted since visiting with Dr. Udell the first time (and being on the new probiotic and the GSH)?  Gracie’s bowel movements aren’t as frequent (from daily, sometimes twice a day, to every other day), and they are smaller and more dense.  She also has been a lot more vocal, humming and making other noises.  It may not sound like much, but believe me when I say improving the BM situation has been a plus.  Also, her keratosis pilaris (a.k.a. chicken skin) has improved greatly with the almost daily application of Amlactin, an OTC lotion recommended by Dr. Udell.

Well, that’s it folks.  Until the next time…

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Which is it?

A shiny, copper penny, or a bit of silver?  Alas, only time will tell.  It’s been said that tragedy and comedy are two sides of the same coin.  True that.  Or maybe I just have a dark sense of humor.  Anyway, maybe this may make more sense as you continue to read on…

For the last 8 weeks, Gracie has cried off and on daily, sometimes for hours at a time.  It’s quite maddening when she gets like this, because we can only guess at what is wrong with her.  During this time Gracie was diagnosed with strep throat, and completed three rounds of antibiotics (two different medicines, as she started having a reaction to the first).  This morning I couldn’t take it anymore, the crying.  Something else is going on with her.  So my wife and I take Gracie to the ER at Holmes Regional Medical Center (HRMC) in Melbourne. 

We explain to the HRMC staff that Gracie has not been eating normally, nothing but applesauce, ice cream, and toast, that she’s spitting all other solid foods out after chewing them up, and has been vomitting at least once a week.  The staff weigh her and we learned she has dropped 9 pounds.  Gracie has never lost weight before.  We are escorted to a room to wait.  Gracie commences to pace the room, ends up sticking her fingers through a hospital trash bag (I hope there weren’t any biohazards in there), and squeezes her hands and fingers so hard that I worry she’ll break her own fingers. 

After the nurses come into our room, we become participants to inserting an IV into Gracie’s arm, and taping and wrapping it to her arm so she wouldn’t pull it out.  Once that was done, blood was drawn and a sedative administered to calm her down.  It took four of us hold onto Gracie during all this, especially when a nurse placed a catheter into her urinary tract.   Once this business is taken care of we wheel Gracie and her bed to other rooms for a CAT scan and an x-ray.  I had the pleasure of donning a lead vest and holding Gracie’s arms above her head while she was conveyed in and out of the CAT scan.  I missed the x-ray because I was busy scarfing down my lunch on the other side of the hospital, but at least I got to bring my wife back some lunch too.

Four hours and a $100 co-pay later, nothing has changed.  Except now we know Gracie has swallowed a coin, as was shown by the x-ray of her abdomen.  None of this is to slight HRMC in any way, though, as the staff there was great.  My wife and I and think they a truly a courteous, caring, and professional group of people.

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Chinese acrobat tryout

Now I won’t claim Gracie is as talented as the Chinese acrobats you see at Disney’s Epcot.  Nevertheless, her ‘acrobatic’ exploits still amaze me.  Check out the video of her spinning her body pillow with her feet while laying on her back.  Also while rolling her head and hands around at the same time.  I get dizzy watching her.  Her typical, younger sister has tried to duplicate Gracie’s act, but to no avail.

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Gracie’s birthday

Flamingo 5k

Flamingo 5k

I started writing this post six weeks ago, during a weekend in which we celebrated Gracie’s 11th birthday.  Hard to believe she’s only about an inch shy of being as tall as her mother.  Guess I should finish this post.  Anyway, an update on things… 

Gracie’s mom and my wife, Kristine, was diagnosed with breast cancer in December.  After her mastectomy and reconstruction, Kristine’s cancer was initially determined to be Stage IIIb, which meant her 5-yr survival rate would have been less than 50%.  Then a week later the doctors tell us they took another look at the pathology report and downgraded her cancer to Stage 1a.  Her 5-yr survival rate is now better than 88%.  We’ll take those odds…

Kristine is a warrior.  I am in awe of how she has handled things.  She sets an example of how one should face being put in a situation such as she has been.  Today she participated in Melbourne’s Flamingo 5k.  My thanks to all her friends from Bethany Christian School and Kathi from Gabkat Fitness who participated in the event.  Go Team Kristine!  Gabrielle, Gracie’s sister, and I were also there to participate.  Unfortunately, Gracie and my mother, both of whom were going to participate, were unable to do so.  Gracie was ill, so my mom ended up staying home with her.  I was looking forward to pushing Gracie up over the Melbourne Causeway!

As for doing the stem cell therapy this summer for Gracie, it’s not looking like that will be within our reach this year.  My fundraising efforts have completely stalled out.  Mostly because I stopped trying.  I was on the verge of giving up and taking the blog down, but a friend of mine convinced me to do otherwise.  So I will be resuming my efforts.  We’re planning on moving forward with the treatment next summer, even if we pay for most of the costs on our own.  So if you wish to help, please tell your friends and family about Gracie’s blog and ask them to donate a few dollars.  This treatment is the only real hope I personally have of Gracie getting better.

Finally, a comment about a statement a particular autism advocacy organization makes.  This organization states that autism is treatable.  It is statements like this that bother me.  We’ve been ‘treating’ Gracie’s autism for eight years now, with nary a sign of progress.  Cancer is treatable.  It is possible to recover from cancer.  You don’t treat autism, you only live with it, try to manage it in the best way possible.  Hopefully, stem cell therapy can change that, even if only marginally.  If it doesn’t, then I will know at least we tried our best.

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Revelation

Hello everyone.  Just thought I owed everyone an explanation for my absence these last few weeks.  Long story, short… my wife, Kristine, was diagnosed with Paget’s disease on December 14, 2012.  Paget’s is a rare form of breast cancer.  However, being a rare form doesn’t mean it’s any more or less dangerous than other forms of breast cancer (at least according to my limited knowledge). 

Anyway, Kristine faces surgery and chemotherapy very soon now.  It is still too early to know all that lies ahead at this point.  Normally I include an appropriate graphic in my posts, but the sight of the cancer images available prevented me from doing that.  For those that know Kristine personally, please respect her privacy.  She really isn’t up to discussing this with everyone.  If you must, I’d rather you send her a card to let her know she’s in your prayers.

Finally, I will continue to place posts here about Gracie and our cause on an irregular basis.  Obviously you understand Kristine’s welfare is my overriding concern at this point.

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Stormy weather ahead…

Florida_Keys_Thunder_Storm_OceanLast Friday I received some very unsettling news.  I cannot divulge any more at this point, without infringing upon someone’s privacy.  What I can say, though, is that our plans to pursue stem cell therapy for Gracie may have very well been derailed.  We’ll see as things progress.  For now and the foreseeable future, my attention must be focused elsewhere.  I hope you all understand.

I’ll be honest with all of you, I am very discouraged at this point.  I had hoped more people would share the news about Gracie’s blog, and encourage their friends and family to do the same.  To date we’ve only managed to raise less than $2,000.  Please, help us get the word out there about Gracie’s blog.

Please keep us in your thoughts and prayers.  I expect some challenging times ahead.

But before I go, I want to share an interesting story…  Last night I was out with some coworkers of mine to celebrate the beginning of our holiday break.  I finally worked up the courage to approach a certain coworker, who I happen to know has a severely disabled daughter, and ask him about his daughter and how she came to be in her present state.

Know that I do not have an anti-vaccine agenda here, and that I’m only telling you what was told to me last night.  My coworker tells me his daughter was a typical 5 year old child, when she went in to receive a series of vaccines.  Within hours she exhibiting signs of a vaccine injury.  He told me about how his daughter’s brain swelled, how she was rushed to the hospital, how her condition rapidly deteriorated, and how his marriage disintergrated in the intervening years that followed.

Today my coworker’s daughter is 28 years old.  She is wheelchair-bound and cannot speak.  Her condition mimics that of multiple sclerosis (MS), that is, her strength has slowly waned over the years.  Heartbreaking, really.

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