possibly being hacked

my antivirus informed me the computer's being hacked, but it can't do anything about it. So if it doesn't sound like me, it isn't. I've got to go back everything up the best I can. I'll be back, when, I don't know! Prayers welcome!

Kelsey

"PCS is sad to announce this. We have since December 1st been investigating a report about Kelsey. PCs was fooled on this and it is very hurtful because we feel that it is hardship to families who have suffered loses as well as her artist we was told Kelsey passed and the Mackayla was diagnosed with leukemia. We spoke with Tari sister in law Daela who stated that it was all lies.

We have fully investigated this matter and found that there is no death record with Dallas memorial hospital. There is certain information PCS can obtain due to releases. We have found that Kelsey does have an illness but has not passed away. We have found that Tari suffers from a disorder herself of Bi Polar but this is still one of the hardest things we had to report. PCS feels that this was hurtful to many as well as us due to we had notifications on her caringbridge page as well as her mother attending a memorial that was set up for her. PCS will now be changing are rules and regulations on children coming into our program. It is sad to have to have others suffer because of one bad seed. We also do not take responsibility for Tari actions because we are only reporting what is told to us. Thank you for all your support and PCS is again sorry to be the ones to report this horrible action because no parent should tell their child is dead and hurt ones who care for that child."

I'll be removing the post on Kelsey shortly. I'm just disgusted...

If I gave you a link and told you that you could have fun, learn a variety of things, and help end world hunger at the same time....

Would you click that link???

FreeRice.com- take a quiz on a subject of your choice. Have fun, learn new things...and for each correct answer, rice will be donated to to the United Nations World Food Program. FreeRice has generated enough rice to feed more than two million people since it started in October 2007!

My best level was 30, and by playing I donated 5,ooo grains of rice!

After you play, be sure to add a banner to your page and let me know how you scored!

So.....

will you click that link?

Calling All Prayer Warriors!

Baby Stellan, aka "MckMuffin", aka "MckMiracle", has been taken to the E.R. after a recent illness quickly progressed until he was turning blue.

On Tuesday morning, Dennis Reed was taken to the E.R. by ambulance, bleeding profusely from his mouth, losing five or six large clots, on top of an on-going fever. All the kids pulled together when they heard Christine shout, "Call 911!", and four hours later Dennis was released home. While Dennis was at the hospital, a neighbor came over and cleaned the pools of blood for the family and watched the kids. Dennis was very clingy after coming home, and continued to loose clots from his incision site. On Friday he had his palette checked by the surgeon, who said it was not infected, but put him on antibiotics just in case. They found out that Dennis had only lost half a pound since his surgery. There was an extra flap of tissue, though, that may need to be removed in a future surgery.

On Friday, CDH baby Olivia's sats droped to the 40s and her heart rate went down significantly. She was first extubated and then re-intubated with a larger tube. After that they bagged her which did not work, then moved her back to the oscillatory vent which inflates and holds the lungs open, which did not work either. Then a drainage tube was inserted into her lungs, and they got quite a lot of fluid out. Finally she started to respond, but with her oxygen being so low for so long, it's very likely it caused damage to the brain, but how much they can not yet tell.

Baby Kayleigh, CDH warrior's parents were recently told Kayleigh's time on earth was coming to an end. But Kayleigh decided otherwise. They now have a plan of action, but it's certainly not going to be an easy road, nor one with a guaranteed survival. Please keep this PICU Princess in your prayers!

On the 17th, CDH & Situs Inversus (Heterotaxi) warrior Veiyah had her worst episode yet. The nurse came in to do her blood draw and Veiyah got so upset that her oxygen saturation went down to below 50 (normally for her, should be 70's and up) and her heart rate dropped from 130 bpm to 30 (thirty) bpm. The nurse started to balloon air into her breathing tube, but when her heart continued to slow, chest compressions had to be started as well. A minute later she still wasn't improving, and the nurse called for help, and everyone ran in and attempted to revive her, while her mother yelled for her baby girl to come back, to not leave her, too, like Veiyah's twin sister Aderah did while still in the womb. Finally she calmed down, and her sats rose. Miraculously, just one day later, Veiyah was able to be extubated. And though she was still in the PICU on Christmas, that is fine for Veiyah's family. After all, Veiyah is alive and fighting, and that is the best present they could have asked for.

8 year old Eden Adams has been battling Stage IV Neuroblastoma for four years, and as of right now, it is no longer a matter of how to beat the cancer, it is a matter of keeping her as comfortable as possible, and praying. Praying for Eden, whatever the outcome may be- whether a life saving miracle, whether a peaceful passing...Princess Eden needs all the prayers she could get!

Okay, I'm sure I'm forgetting a few kids, but this should keep you busy for a bit!

~Alex

New Winter Layout is DONE!

How'dya like the new look? The basics were done within and hour, and the extras took 1-2 hours or so. So, for roughly under 3 hours of work, I'm very pleased with the results! The background is free from The Cutest Blog on the Block, the header is by me, and I used quite a few tutorials to add a second sidebar and a lot more, all of which I've linked to somewhere. Please let me know what you think!

I Slept ALL DAY (literally) // The True Meaning of Christmas

I'm not kidding. I went to sleep last night, and woke up a few minutes before 6PM. So, literally, I slept all day. Ah, the joys of an auto-immune disease after Christmas!

After I woke up, I watched Wall.E with my family. No screaming, yelling, fighting, or emotional abuse from my father, either. He got that stuff out of the way yesterday...no later than a minute after we were up.
Nice, huh? But all in all, it was a nice day.

Wall.E- Officially one of my favorite movies. If you haven't seen it yet, I highly recommend you do!

Now my mom, Sam, and my father are watching The Chronicles of Narnia: Prince Caspian. The reason I'm not watching it, is that I'm just too worn out. Yes, after sleeping ALL DAY, two hours sitting in my wheelchair had me worn out. But I don't mind, really. It felt good to sleep, and I'm content watching House with my cat on my lap and typing an update.

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I think this is the first year that I truly understood the meaning of Christmas. GOD, the Creator of the universe, sent His son, a part of Himself, to earth, born of a poor, young virgin, in a place made for animals, to experience pain and suffering, and then died on the cross, for us. And not only did He die physically, but spiritually, too. For three days He suffered the fury of hell, and rose again, to form a New Covenant, that we may have true life! That we may be forgiven of our sins, and be welcomed into Heaven when our mortal bodies die, to live eternally with the One who is God, the one who is true, pure, agape Love, the Great I am...and great He is! And what must we do in return? Nothing, except accept His gift of Love.

Christmas is a celebration of the sending of God's son to earth...the King, born a poor child, in a lowly manger...t0 live and die, for us.

Getting some poetry off my chest

I've had these poems running though my head, and it's time I write them down!

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Baby, hold on to your smile,
I know you're tired
But hold on to your smile
I know it's been awhile
Since things felt okay
And it's hard every day,
But hold on to your smile

'Cause it's no fun being sad,
Not fun being mad,
Even though things are bad,
Hold on to your smile

It hurts to see you hurting

You don't have to be strong
Like you've been all along
It's okay to cry
I bet you've wondered some why's
And I'd be angry, too
If I were you,
But we want you to be happy
We'd do anything
...Oh, baby... please...

Just hold on to your smile

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How can you go along
When they're just hanging on
How can you sit there
Whilst horrors they bare
How can you know
When they've no where to go
And go along
As they try to be strong

How can you do nothing
While the children are suffering?

Note- In the line "When they've nowhere to go" I'm not referring to a physical shelter, but a refuge so to speak, an escape from what they're going through.

Note Note- When writing the first poem, there were two children I had in mind, both fighting cancer, with extremely grim prognoses. They've been so strong through it all, but now, losing the ability to walk, to play, constantly on pain medications making them lethargic, they're having a hard time holding on to their smiles. Every day has become just another day...a repeat of the same emotional pain, and they've reached the stage that they seem to somehow realize that they're not getting better, and they're just so tired of fighting. I don't want to post these children's names here, but please keep them in your prayers...these are children who are normally happy, goofy kids with a love for life, whose spark has left their eyes...please, please pray they can get it back! To be dying is enough without feeling sad, hopeless, and alone. I can email you their web links if you would like, but I just don't feel right putting their names here.

Note Note Note- Yes, I'm aware that I use bold and italics way too much.

I've Been Tagged!

I've been tagged by "Warrior on the Outside, Pirate on the Inside!" aka the update page for Congenital Diaphragmatic Hernia warrior Owain and his lovely mom =)

The Rules:
*Link to the person who tagged you.
*Share 7 random/weird facts about you.
*Tag 7 people at the end of the post, and include links to their blogs.

~I know what I'm getting for Christmas because I ordered my presents! My mom isn't very computer-savvy (if you don't use it ya lose it!) so she let me order the items that had to be ordered online

~I have two dolls and lots of stuffed animals. Hey, they make me happy, so who's to say I'm too old for it! One is an American Girl I got from my grandma, and one is a "Sew Able" doll which I was given by a wonderful lady named Marianne. The dolls head is bald (there are two types of them, prosthetics, and cancer, and I have the cancer one) and I have a wheelchair for her, too.

~I collect Coca-Cola memorabilia and other vintage finds, as well as cool pins

~I love sewing and want to learn to knit

~I really miss my hair, and sometimes still reach my hand up to twirl it, only to find it's not there.

~Sometimes people think I have cancer (between the short-short hair, taking methotrexate, and having to wear germ masks frequently, it happens, and embarrasses me because I have it easy compared to kids with cancer)

~I can't read music whatsoever, but can sound out most songs on the piano and memorize them (right now I'm working on Silent Night, What Child is This?, The Little Drummer Boy, and a few others)

***EDIT***
I just noticed that I forgot to tag 7 people! Duh!
Okay, so I'll tag....hmmm, well, I'm only going to tag one person, but if you'd like to do this, have at it! I tag
Zack Please keep him in your prayers, he's in a lot of pain and they're not sure why.

Tuesday Treasures

Guess what??? Come on, guess! What could my Tuesday Treasures be???

Give up???

It's YOU!!!

Yup, it's official- I have six "followers"!!! How awesome is that!

Oh, and my blog surely must be growing, as I've gotten my first rude, mean spirited anonymous comment! Yeah! Since I have my blog set to comment moderation (I don't want to miss anyone's [nice] comments!) it was deleted before it ever made it to my blog. And, yes, that's the what's going to happen to all those sort of comments, unless it's so ignorant and mean-spirited that I think it's too funny not to share with you all! =)

So thank you, my awesome followers! I'm off to wrap presents!

~Alex

Be sure to go check out Storing Up Treasures in Heaven and join in on the Tuesday Treasures fun!

What's Wrong with this Picture???

Can't figure it out? Here's a hint- It's green and scaly, and has it's own movies.
Yup, you guessed it! It's none other than Godzilla.

Last I checked, God was in the bible, not Godzilla!

Oh, yeah, and the shephards arm is missing as well...probably done by the same 11 year old that put Godzilla in the manger scene!

I Would Gather Children

I stole this poem from Storing Up Treasures In Heaven. Go check them out! They're one awesome family!

Some would gather money
Along the path of life

Some would gather roses,
And rest from worldly strife.

But I would gather children
From among the thorns of sin,

I would seek a golden curl,
And a freckled, toothless grin.

For money cannot enter
In that land of endless day,

And roses that are gathered
Soon will wilt along the way.

But oh, the laughing children,
As I cross the sunset sea,

And the gates swing wide to heaven,
I can take them in with me!

~Author Unknown~

Guess Who's Adopting A Reece's Rainbow Baby???

I'm guessing you probably know Renee from Life with my Special Ks. Lately, as you may have noticed, the Reece's Rainbow kids have been really been pulling on her heartstrings...and after a lot of prayer, they have committed to adopting a little girl with DS named Kellsey. The process is being started to Bring Kellsey Home!

Click the above image to visit Renee's new blog dedicated to bringing home Kellsey

Click Here to post this button on your blog!

Kayleigh's health is improving!!!

The last time I posted I spoke about a baby girl named Kayleigh. It appeared that she would soon be leaving for heaven, but by a miracle, she is improving and recently opened her eyes for mommy and daddy!

HALLELUJAH!!!!!!

Even when doctors say there's "little hope", they're saying there's humanly little hope, medically little hope....but with God, there is ALWAYS hope!!! God is above "humanly", He is above "medically"...He is the great "I AM"!

Jesus, thank you for this amazing healing! I know there's a long way to go, but WOW! How awesome are you, Lord! Thank you for being Kayleigh's Great I Am, and her family's Great I Am, and for being my Great I Am...and Lord, great you are!

Reece's Rainbow // Pray for Kayleigh // I haven't fogotten you!

This is a double triple post =)

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Pray for Kayleigh!
Kayleigh was born prematurely at one pound. She is now over five pounds, but one struggle after another, it appears her little life is coming to an end. Nothing is impossible with God, but the family is having to prepare for the worst, and in need of prayers, as well as those for little Kayleigh. Click the button below to visit Kayleigh's update blog

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Reece's Rainbow

"Once our eyes are opened, we can't pretend we don't know what to do. God, who weighs our hearts and keeps our souls, knows that we know, and holds us responsible to act" -Proverbs 24:12



Will you give the gift of a family to an orphan with Down Syndrome?

Reece's Rainbow is a registered 501(c) non-profit ministry helping families to adopt children with Down's syndrome from around the world, where without your help, they will suffer unimaginably and, in most cases, die at a very young age. Please, don't look the other way. I'm not going to tell you to donate all you have, or even a fraction of it- just please, read this, and pass it along. And if you are able, consider a donation; a few dollars can save these children's lives and give them the love they so deserve, and the chance to truly bloom. And yes, all donations are tax deductible!

"For those of you who are new to our ministry, Reece's Rainbow promotes the international adoption of children with Down syndrome. 120 children with Down syndrome and other special needs have found adoptive families in only 2 years!! Donations from private individuals, businesses, and other charitable foundations have made it possible to provide adoption grants for nearly every child, meaning families have had the financial support they need to make a commitment. They have been able to rescue one or more of these precious children from orphanages and mental institutions around the world."


The Angel Tree

"Our Christmas Angel Tree Project is our #1 fundraiser for the year. This is the only time when ALL of our waiting children with Down syndrome are openly visible and eligible for grant donations. By sponsoring a child today, you get to share in the joy of uniting families with very deserving children. The average cost of an international adoption is $25,000, so every penny we are able to raise can literally change the course of a child's life! And remember, 100% of your tax deductible donation goes directly to your sponsored child. Reece's Rainbow covers the cost of Paypal fees, shipping, printing, etc. (donations to our Raising Awareness fund are always welcome to help support these costs.)

With your sponsorship gift of $35 or more (per child), donors will receive a beautiful porcelain ornament, with your sponsored child's photo on the back, to hang on your Christmas Tree! Even if you are not Christian, you can still make a tremendous difference in the life of one or more of these children. If you prefer to NOT have an ornament sent to you, just let us know. The Angel Tree is a very meaningful and personal Christmas gift donation opportunity. We will send the ornament, along with a beautiful gift card, announcing your gift to the intended recipient. These are great gifts for your friends, family, teachers, therapists, etc! International sponsors are welcome as well!

We invite you to browse the profiles of our families who are already home with their children, and those who are in various stages of the international adoption process. We are so excited about the remarkable success this ministry has already enjoyed (120+ children with Down syndrome and other special needs have found their families in only two years), and the MIRACLE that grant donations from this Angel Tree Project will mean for each of these beautiful children!

Please visit our Waiting Christmas Angels Gallery and sponsor one or more of our orphaned children with Down syndrome today!"

Forward this announcement to everyone you know, and share this special opportunity to really make a difference in the life of a child with Down syndrome!

Any questions can be directed to Andrea Roberts at bamaroberts@comcast.net All donations are tax deductible, and 100% of your gift goes to your sponsored child!

God bless each of you this Christmas, whether you are Christian or of another faith. The need transcends faiths, ethnicity, geographic borders. Thank you for your continued advocacy and support for this ministry, and for sharing this opportunity with everyone you know!"


Did You Know

In Central and Eastern European countries alone (this would include Ukraine, Kazakhstan, Romania, etc, but NOT Russia), 1.5 MILLION CHILDREN who have been abandoned by their families for one reason or another and are living in "public care" (that's the nice way to put it). If statistically, 1 out of every 733 live births results in a child with Down syndrome, that means at any given time there are 2,046 children with Down syndrome who need families. THAT'S JUST IN EUROPE!! Some do not survive because of serious medical complications...some do not survive because of lack of medical attention, lack of food, lack of LOVE.

In Russia, there are over 700,000 children waiting for families, meaning at least 955 children with Down syndrome wait, languishing. In ASIA (China, Hong Kong, Korea, India), there are 3,572,000 orphans, with nearly 5000 children with Down syndrome who are unwanted. Many of those children are killed at birth. The "lucky" ones end up in orphanages and foster care situations.

In the United States alone, 137 million people claim to be Christians of some denomination. If only 1% of the Christians in this country adopted just ONE CHILD, 1.37 MILLION CHILDREN from abroad would have loving, Christian families to grow up in. Of those 1.37 million, 1,869 of those children have DOWN SYNDROME.

Typically, children are sent to the mental institutions at the age of 4, so we are in a frantic race against time to earn grant donations and find adoptive families for them before their time runs out. Although they can still be adopted once they are transferred, we work really hard to prevent that from ever happening.
Please be sure to take note of their birth-dates, so you know when they turn four. Pray for them and think of them on these days. When other children are celebrating with parties and presents and looking forward to preschool, these children have no idea the horrors that await them when they turn 4. After an orphan has been sent away to the institution, after they turn about 4, their chances of finding a family decrease exponentially, and most of them will suffer every day, until the day they die. Some of them have already turned four, and by a miracle of God, have not been transferred yet. These children truly are living on borrowed time.. Please help us save these children! Look how many have already been saved, and are living healthy, happy, productive lives with their families!

Your donations can truly mean the difference between life and death for these little ones. The high cost of international adoption is the number one factor that keeps families from committing. Your "gift of a family" makes it possible for adoptive families to rescue these very deserving angels.

Recently many specials have been done involving mental institutions across the globe- headlines such as "modern day concentration camps" have been used to describe the situations, and they're not far off, either. These children have amazing potential. Everyday in America people with Down Syndrome are getting jobs, driving cars, owning homes, having families. These children are human beings, living in conditions people would shudder at if animals were living in them. I've been told that 80% of the children sent to the institution die within the first year of being there. Here are a few links that give a look into a life in an institution, one which these children will face soon if you don't step in and help them.
Bulgaria's Abandoned Children (highly reccomended)
Serbia's Horrific Institutions a Relic of the Past
Warehouses of Neglect
Orphan's "Near Death" in Romania
Neglect of Serbia's Disabled Revealed


Look at These Faces

Is God speaking to you?

Are you the person meant to help one of these children in a way big or small?

Are you meant to be a child's "forever family"?

These are just a few of the 150+ precious children waiting to find their forever family. They're waiting for you.


http://ReecesRainbow.org

If you would like, you can post these banners on your myspace, facebook, blog, or other web page to help raise awareness for Reece's Rainbow. Hey, you could even make it your myspace default image! It's my goal to see one of these buttons on every one of my friends' pages. Are you up for the challenge?


Grab This Button


Grab This Button


Grab This Button


Grab This Button


Grab This Button

Please note that this bulletin message is a compilation of information from the Reece's Rainbow site and other resources. Reece's Rainbow is not responsible for any potential false information/etc. This bulletin has information taken from the Reece's Rainbow site, but is not wholly from Reece's Rainbow, Andrea Roberts, or any affiliates, and being so, is not endorsed by them. Thank you

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I haven't forgotten you!

To my readers, and to whom I am a read-ee, I have not forgotten you! I've not been keeping up with everyone religiously as I once did, but I am still reading. I've found, though, that my blogger experience has been more enjoyable since I've been reading everyone's blogs as I get to it, as I feel like it, no pressure. I love reading all your blogs, trust me, I do, but taking more "me time" has felt really good and helped me enjoy your blogs all the more.
I've also been commenting less. Sorry about that

Looking for a Forever Family

There is a child named Daniel who's family has decided to dissolve the adoption. He is in second grade and has sensory processing issues. You can learn more about Daniel here, and help him find his forever family. Listen to your heart...maybe you are meant to be his mom, or dad...maybe you know someone who is meant to be his family. It may seem crazy, but sometimes God's plan is different than ours!

Please try not to judge Daniel's current family. They most likely are just trying to do what is best for Daniel. I am *NOT* encouraging adoption "disruptions", I am just asking that you do not say or think judgmental things about the family, as only God truly knows the situation.

Thank you, and please help spread the word!

Two Years Ago - A Poem for Mia

Two years ago today
A life was changed
A precious little girl
Entered a new world-
A world of doctors
A world of pain;
Mia's life would ne'er be the same.

For two years ago
She contracted Meningitis,
Which spread to her brain
And caused Encephalitis.

Now warrior Mia
Was in a great fight!
But she never gave up
Not a day, not a night

And though the battle was hard
And the odds were frightening,
With the love of her family
Her health was brightening.

Mia's battle isn't over,
She fights everyday
Against seizures and brain damage
But she'll find a way!

Her smiles light the room
And her sweet, happy ways
Give hope to those who love her
And get them through each day.

Mia has seizures
And she's working on walking
Her eyes speak for her
Though she's not yet talking

A precious princess
Lights up our lives
And constantly makes progress
With her courage and drive

We love you, Mia,
From your head to your toes
Your soft little curls
And your button nose

Two years ago
Your life did change
But we'll fight by your side
Forever and always

Update & Cushing's Syndrome

About 2 years back I was un-officially diagnosed with Cushing's Syndrome. My mom, being in the medical field already knew about it, but I just recently looked it up, hoping there was some way to get rid of it. The symptoms of Cushing's are some of the same as JDMS, and could be part of why I'm experiencing JDMS symptoms whilst I'm in remission.

Symptoms
The symptoms in bold are one's that I'm experiencing

Signs and symptoms of Cushing’s syndrome vary, but most people with the disorder have upper body obesity, a rounded face, increased fat around the neck, and relatively slender arms and legs. Children tend to be obese with slowed growth rates.

Other signs appear in the skin, which becomes fragile and thin, bruises easily, and heals poorly. Purple or pink stretch marks may appear on the abdomen, thighs, buttocks, arms, and breasts. The bones are weakened, and routine activities such as bending, lifting, or rising from a chair may lead to backaches and rib or spinal column fractures.

Women with Cushing’s syndrome usually have excess hair growth on their face, neck, chest, abdomen, and thighs. Their menstrual periods may become irregular or stop. Men may have decreased fertility with diminished or absent desire for sex and, sometimes, erectile dysfunction.

Other common signs and symptoms include

• severe fatigue
• weak muscles
• high blood pressure
• high blood glucose
• increased thirst and urination
• irritability, anxiety, or depression
• a fatty hump between the shoulders (uuggghhh...some day I may post a picture of my "camel hump", but I'm going through a highly self concious period, and I feel like the hunch-back of notre dam)
  

Sometimes other conditions have many of the same signs as Cushing’s syndrome, even though people with these disorders do not have abnormally elevated cortisol levels. For example, polycystic ovary syndrome can cause menstrual disturbances, weight gain beginning in adolescence, excess hair growth, and impaired insulin action and diabetes. Metabolic syndrome—a combination of problems that includes excess weight around the waist, high blood pressure, abnormal levels of cholesterol and triglycerides in the blood, and insulin resistance—also mimics the symptoms of Cushing’s syndrome.

Cushing’s syndrome occurs when the body’s tissues are exposed to high levels of cortisol for too long. Many people develop Cushing’s syndrome because they take glucocorticoids—steroid hormones that are chemically similar to naturally produced cortisol—such as prednisone for asthma, rheumatoid arthritis, lupus, and other inflammatory diseases. Glucocorticoids are also used to suppress the immune system after transplantation to keep the body from rejecting the new organ or tissue.

Treatment depends on the specific reason for excess cortisol and may include surgery, radiation, chemotherapy (lovely, if my doses are uped anymore I'll be on a cancer protical!), or the use of cortisol-inhibiting drugs. If the cause is long-term use of glucocorticoid hormones to treat another disorder, the doctor will gradually reduce the dosage to the lowest dose adequate for control of that disorder. Once control is established, the daily dose of glucocorticoid hormones may be doubled and given on alternate days to lessen side effects. In some cases, noncorticosteroid drugs can be prescribed.

Now for the Update!

Crazy
I just wanted to let everyone know that we have not abandoned you! Things are crazy and it's been hard enough to get through the day, none-the-less keep up online.

The sickies-

Sam is probably in the worst shape, with an 102* fever, no appetite, and a sore throat that looks like strep. Needless to say I'm worried as with this insurance bit we may not be able to get him in to the doctor for awhile, and a friend of Alex's recently had Encephalitis that routed from Strep.

Alex is just all around stuffy, achy, and tired, describing the pain as "like before I was in remission". Also very worried about that!

I am even more anemic than before, and not much closer to any type of diagnoses. I have Pitting Edema, mostly on my lower legs, and my all over my body I'm getting new lumps, bumps & swelling on my joints. The NP I waited and waited to get in with barely spoke english and hit offended me greatly for reasons I don't feel like sharing (let's just say that she REALLY needs to learn to listen, needs to learn English, and needs a course in "bed-side manner" ASAP!). She ordered the wrong labs, perscribed an anti-biotic I told her I did not do well on, and sent me off with nothing more accomplished than before. I saw a doctor @ the pain clinic today, who is getting on my nerves to say the least! In October he said I didn't have Lupus that he could see it "a mile away", and is now saying that it's likely I have it. Of course rather than running tests he just said that I wasn't going to be diagnosed until I saw the rhumatologist. Usually I just love this doctor, but lately I don't know what's going on with him (and the rest of the world!). He did, though, confirm that I have Reynaud's Syndrome (though the discoloration is not as severe as the pictures in the linked web-page show), which Alex has as well. Medical bills are piling up extremely fast and we've been sent to collections numerous times already. We are paying nearly everything out of pocket and aren't getting very far with the insurance stuff. Nothing like seeing suck-y doctors and paying cash for their ineptness!

Thanksgiving
Brian, my eldest son, came from Michigan for Thanksgiving this year, (just to remind us of all the things we have to be thankful for! Ha-ha. (FYI, I am kidding...I know that we have plenty to be thankful for)) Alex redid his DJ-ing site for him and within 4 days he had over 85 friend requests! This year, for the first time, we ate thanksgiving dinner at a restaurant...I just wasn't up to all the cooking and cleaning, as much as it breaks my heart. Brian went back home to his kids on Wednesday, much to Sam's dismay. We were all in a lot of pain, and after Alex apologized for "ow-ing" so much (of course I told her not to worry, she has every right to "ow!"), Sam remarked, "well at least your heart's not broken! That hurts more!" He's so precious =) Alex says she's going to upload pictures from Brian's stay soon.

Mindy
As if things aren't hard enough, the cat is on strike from her litter-box. Why? I don't know! We've been putting her in the utility room at night (where her litter box, food & water are), but it doesn't do any good! She would be 'outa here if Alex didn't love her so much. But makes Alex happy, so the cat will stay, even if our room is constantly filled with the smell of cat urine. Medically wise- Alex thinks that Mindy having seizures, and her arthritis is worse.

It's so hard taking care of sick kids on top of my own health...it leaves you in so much physical and emotional pain, with no answers. My kids keep apologizing for being sick, and I feel so guilty I can't do more for them. Don't get me wrong- I love them to death and would take care of them any day, in any pain, it would just be so much easier, for me and for them, if I didn't have to be in so much pain as well.

Do you use the "'r' word"? Think its use is okay?

****WARNING****
This post contains swearing and is very upsetting, especially those who know or care for a child diagnosed with mental retardation.

If you think that use of words such as "retarded" used as an insult is no problem, innocent humor, or un-offensive???

If you said "yes", let me tell you right now- You're dead wrong.

If you're still not convinced...
GET OFF MY BLOG and DON'T COME BACK!


Here are just a few more IGNORANT and cruel comments I've found on the internet regarding the word "retarded" and boycotting "Tropic Thunder". Please note that some these comments contain swearing.

"I mean, if a person is that stupid, no one should care about them in the first place.."
"How can you not like the word retard when its what you are"
"At the end of the day, the only people who made a big deal about this were the people running the protest... who pretty much told the retarded people it was offensive. I wouldn't have minded if they had come to that conclusion themselves and protested, but this was just some jackasses trying to get publicity."
"They are all just mad cause they are retarded duh!"
"abort retarded babies"
"What we, the Non-Retards need to do, is go on a protest against the retards and their parents. WHY you ask? Our protest woudl be that 'We are sick of seeying your ugly ass retarded children when we go out.'"
"now after this boycott shit, I just wanna hang every fucking retard I see. So ask yourself...'DO RETARDS HAVE SOULS?' the answer is "NO" and they also don't have brains. BURN IN HELL RETARDS!"

Ways to join the fight against the "R Word"-

Watch and pass along these videos-




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Don't allow your children to use the R Word. If you hear someone say it in the grocery store, tell them how it makes you feel- some people genuinely don't realize how hurtful it is. Tell your friends the same. Put a sign on your door telling all who enter your doors that the R Word is not allowed in your home, and enforce that rule the same as you would if they walked up to someone and called them "bastard".


Q&A-
Q- What about "freedom of speech"???
A-I am all for freedom of speech. But then again I also think people should also take advantage of the freedom to not use hate-speech, watch or associate themselves with those who use it.
Q- Why are you giving these people attention? That's what they want, isn't it?
A- I give these people attention because people need to be aware what a problem this is. I want to encourage people to boycott movies like Tropic Thunder...if they don't make money off of the movie, they'll stop making them. I don't think it should be "banned", but I think parents need to be teaching their children not to use retarded as an insult, whether they're trying to be hurtful or not, and people need to know it's not funny, it's not innocent humor, it's just cruel and extremely ignorant.
Q- What's the line between "retardation" and "the R Word"
A- Redardation is a medical term. The "R Word" is the word "retardation", "retard", or "retarded" used as an insult, including when it's in a joking way (You look so retarded, bro!)

The R-word is never okay to say.

Princess Kelsey has Received her Butterfly Wings and Heavenly Tiara

I went to Kelsey's page to send her mom a picture I made. Then I found out she passed away. I guess I'm a bit shocked...I mean, I knew the odds were stacked against her, but she's such a trooper...I just can't believe it.......I'm trying to hold myself together, but it's impossible...I want Kelsey back, playing and happy...I don't want her family to be hurting. I know she's free and happy in heaven with her beautiful butterfly wings, but I know that her family is hurting so badly...not only the devastation of your precious child having these "designer genes" that would rip away what we naturally perceive as a "happy childhood", but to then "lose" your child all together......it's the worst-case-scenario for a human being. I can't imagine the pain. To be left on earth, when your child, the product of your love, goes on to heaven.....

Here is a poem I wrote a while back. You're probably getting tired of it by now, as I've used it a few times on this blog, but this time it really fits...I didn't know it then, but this seems to have been written precisely for Kelsey.

Fly high butterfly
Dance with Jesus in the sky
As every day goes by and by
We ask the Lord why oh why

...Why an angel had to die.

We know that death is not a period,
But a comma in the journey Home
We will see you again someday,
Until then, in Heaven you roam.

{Alexandra Mikaela 2008 All Rights Reserved (seriously)}

"...They had no sudden healing
To think that providence would take a child from his mother while she prays, is appalling...
Who told us we'd be rescued?
What has changed and
Why should we be saved from nightmares
We're asking why this happens to us
Who have died to live, it's unfair...
This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive..."
-From "Held", performed by Natalie Grant


Here is the picture I made, dedicated to "Butterfly Princess Kelsey"

(Click image to view full size)

I used a couple of different resources to make it, and in their terms of use it asks that I credit them, so here it is-
-the tiara is from http://scrapbookflair.com
-the wings are by http://flickr.com/audreyjm529 (and then I edited them a lot)
-the flower is from http://flickr.com/matze_ott

Click here to visit Kelsey's page

Sometimes all a person like I
Can do on a day like this is sigh
-Alexandra Mikaela (Me =0) from the poem "Sigh"


So I didn't have a bad day, but I'm left with all these feelings, like a wound, needing to be tended tenderly. It's just so many different emotions, and I don't know how to address them whatsoever. For the first time in a long time, I feel like my mom isn't hearing me. I know she loves me, but I feel like I'm talking to a wall lately. She wants to hear, but for some reason doesn't notice the big 'ole stack of bricks in between us. But I got a message from someone today that really made me feel good. I am on the right path, and things will pay off. I just have to be patient...(Patient?! I'm A.D.D, dang it!) Prayers are always welcome...Lord knows this family needs them!

8i8

You Know You're a "Smiles and Trials" Groupie When...

• You wake up at 2am and think to yourself, "Oh, no! I didn't check on the Reeds today!"
• You can name all 11 of the Reed children
• You have gone through all of the Smiles and Trials archives
• You can name all 11 of the Reed children AND put the faces to the names!
• You go to the store and see a Hannah Montana barbie and think to yourself, "It's Anna Montana!"
• Every time you see a Groovy Girls pet, you immediately think of Sveta and Zha-Zha
• Every time you see a llama you start to giggle
• As sitting down for dinner, your husband asks, "So, what'd Christine cook up today?
• When someone is having problems with their children, rather than referring them to a parenting book, you refer them to the Reeds

Okay, so not ALL of these have happened, but the ones in bold have!
I may add more later, but I just had to share! I guess you could call me a Smiles and Trials groupie!
Thanks to the Reeds for "keeping it real"! You are an inspiration! I know I'm not the only person who's been helped by Christine's blog, and I speak for many when I say, THANK YOU!!!

Here's a big "hurrah!" (yes, I actually say that!) to-

Christine............John

Adam..............Rachel.............Caleb

Sveta...........Annalyn.............Julia

Anna............William..............Andrew

Jonny.............Dennis