Thursday, June 30, 2011

Neurology appointment and a busy week filled with joy and some heavy hearted sorrow ...

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Something about these pictures made me smile and brought me peace when I looked at them.Maybe a reminder of how lucky I am.How lucky she is.I needed that reminder tonight.


 Monday we headed to UCLA for Zoey's 6 month neurology appointment.Dr.Shields is supposedly retired,but not really,from what I could tell.Still seeing patients and for that,we are grateful.He has been a Godsend to us.To Zoey.We chatted a bit and finally circled to what I knew we would,which was the topic of weaning her off her medication.I knew it was coming but the thought of it makes me a little nauseous,I must say.As he sees it,we have a 50/50 chance here.Upon explanation of this percentage,it is as simple and as complicated as this:We take her off and it is split down the middle whether her seizures will or will not return.Crap shoot really.What he is fairly certain of though,is that at this point we would not see Infantile Spasms,which is what she originally started with but rather Tonic seizures,which is what we last saw.So,after a brief discussion we have decided to stay put once again.In all honesty,I cannot ever imagine taking her off.That percentage will never change either,so,end result, status quo for another 6 months as he didn't actually feel strongly one way or another and he left it up to me.He did tell me an interesting tid bit of information however, about a study he did way back when, with Vigabatrin.At that time there was an agreement made by him and his partner in the study and the pharmaceutical company and if I understood it properly,10% of the sales from Vigabatrin goes directly to the Eplilepsy Foundation.Which equates to 1 million dollars a year.Not too shabby I'd say and much needed.

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This picture of Charlotte cracks me up and I really needed that tonight as well.The outfit was her own original design by the way!

In other news,the week ahead is extremely busy. We have 2 weddings to attend before Tuesday.Mark's birthday on Sunday.A baby shower on Sunday.Matt's birthday on Wednesday and Charlotte's birthday next Sunday.All happy celebrations though and we sure will need them because sprinkled amongst the joyful busy we have a memorial service to attend on Tuesday.A service for a precious little girl named Cecilia,who celebrated her 12th birthday in April.Sometime Tuesday night she passed away in her sleep and was ushered into Heaven,I am sure,by her older brother,Isaiah, who passed away 12 years ago.We actually met their parents, when we lived across the street from them before they had children and we were just a young family of 5. Both Isaiah and Cecilia had unspecified genetic disorders but those disorders do not, nor will they ever, define who they are.They are desperately loved children,siblings,grandchildren,niece and nephew and friends, to many.Cecelia is the princess of the family and had a smile that lit up a room.Zoey was so drawn to her,in a way I could never describe and tonight ,when I spoke to her mom,she said in her mind she just keeps seeing Zoey blowing kisses to Cecelia, over and over and over again while at church.Two special little friends.Our hearts are heavy tonight for a family who must journey down a road,again,that no parent should ever have to.Not once and certainly not twice.And they know just what is in store for them and for that,my heart breaks.

Tuesday, June 28, 2011

The simple joys ...

Cailtin and Danny went away to Cambria for their anniversary this weekend so Mark and I were on Mimi and Pop duty.What a blast it is being grandparents.Seriously.

Charlotte is easily entertained and occupied and as busy as she is,she can exude such joy from the simplest of things.At one point in the weekend she was thrilled just playing with the ping pong balls in the foyer with Mark.They hung out there for the longest time.

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Zoey,in true Zoey fashion,was content just hanging back and watching.At one point she briefly joined in and then,out of no where,Charlotte decided she wanted to play Ring around the Rosy with Zoey... I thought it was precious.

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 Charlotte so desperately wants Zoey to do what she is doing.Sit on the couch.Run around outside.Make mischief.She hasn't quite figured out why Zoey can't.

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One day she will though and something tells me,when that time comes,little niece will then become great protector and loving caregiver.It's a beautiful thing,these two girls and the relationship they are forging.Undeniable gifts to each other.





Thursday, June 23, 2011

Sometimes, an article like this,makes me question,is there something more I could or rather should, be doing?

South Korean pastor tends an unwanted flock

In a country that prizes physical perfection, Pastor Lee Jong-rak, his eyes opened after caring for his own disabled son, has been taking in unwanted infants, who if not for his drop box would be left in the street.

 

June 19, 2011|By John M. Glionna, Los Angeles Time

 

The drop box is attached to the side of a home in a ragged working-class neighborhood. It is lined with a soft pink and blue blanket, and has a bell that rings when the little door is opened.
Because this depository isn't for books, it's for babies — and not just any infants; these children are the unwanted ones, a burden many parents find too terrible to bear.
One is deaf, blind and paralyzed; another has a tiny misshapen head. There's a baby with Down syndrome, another with cerebral palsy, still another who is quadriplegic, with permanent brain damage.
But to Pastor Lee Jong-rak, they are all perfect. And they have found a home here at the ad hoc orphanage he runs with his wife and small staff. It is the only private center for disabled children in South Korea.
"This is a facility for the protection of life," reads a hand-scrawled sign outside the drop box. "If you can't take care of your disabled babies, don't throw them away or leave them on the street. Bring them here."
Since 1998, Lee, now 57, has taken in nearly three dozen children — raised them, loved them, sent them to school. He has changed their diapers, tended to their cries in the middle of the night. Today, he has 21 wards: the youngest a 2-month-old, the oldest 18.
His motivation is painfully personal. Twenty-five years ago, Lee's wife, Chun-ja, gave birth to a baby so disfigured Lee kept the boy from her for a month until he could figure out a way to tell her the unthinkable, explaining only that the child had a serious illness and was rushed to another hospital.
The baby was born with cerebral palsy. A mammoth cyst on his head choked off the blood flow, slowly rendering him brain-damaged. Doctors gave him months to live.
Today he lies on a bed in Lee's home, his legs splayed at impossible angles, his feet turned back inward. Eyeing the room impassively, he occasionally lets out a snort or sigh, as his parents regularly vacuum his saliva through a tracheal hole in his throat. They call him Eun-man, which means full of God's grace.
He plays the role of emotional touchstone for an orphanage in peril: Health officials have ordered Lee to close his drop box, saying it encourages parents to abandon their babies.
Authorities say Lee has no formal training and not enough space for his wards, only two of whom are not handicapped; they were left by single mothers. Lee has no license, but for years he had operated underneath the radar. Now he worries he will lose the government funds he receives as the children's legal guardian; the money keeps him in operation, along with donations from local firms and private benefactors.
Orphanage supporters say authorities are missing the big picture. Though there are other institutional facilities nationwide for disabled children, they say, no salaried caregiver could match Lee's compassion and paternal touch.

"Rather than look at what he can bring, they focus on what he doesn't have," said Peter A. Dietrich, an orphanage volunteer. "The enormity of his mission hits you between the eyes. I don't know anyone who goes there for the first time and doesn't tear up."


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Eun-man's birth caused a religious man to question his faith.
"I asked God, 'Why would you give me a handicapped child?' I wasn't grateful for this baby," Lee recalled.
He soon came to regret those words. Looking down at his son, helpless and beyond hope, he says he witnessed the preciousness of life. He and his wife decided to work desperately to keep the boy alive.
In the mid-1980s, Lee said, the disabled in South Korea were often viewed as embarrassing curiosities — more creature than child. Even today, he said, babies with physical deformities are seen as a national shame in a culture that prizes physical perfection, where cosmetic surgeries have become as common as haircuts.
Given his limited brain function, Eun-man needed constant care. He spent his first 14 years at a hospital. To help pay for his care, Lee sold his family food market, borrowed money and took up odd jobs to bring in more cash.
He spent months at the hospital and began visiting the rooms of other disabled children, encouraging their parents not to give up on them. Many began calling him "the pastor."
Strangely, the boy Lee once blamed on God ended up bringing him closer to his faith. In 1992, when Eun-man was 6, Lee entered theology school to become a Christian minister.

One day, an elderly woman at the hospital asked Lee to take her paralyzed granddaughter. The bargain: If Lee said yes, the woman said, she would agree to convert to Christianity. He accepted the child, named Sang-hee, who still lives with him. Months after making the deal, the woman was dead.
A social worker then asked Lee to accept the brain-damaged daughter of a 14-year-old girl who drank and did drugs during her pregnancy. The social worker assured Lee the infant, named Hannah, wouldn't live long.

Lee fed her through a tube, amazed at the child's hunger to survive. Hannah lived six more years: "When she died, I cried so much, more than even when my own parents passed away."
That's when Lee vowed he would never turn away a challenged child. He has officially adopted several as his own and gained temporary legal guardianship of others.

In 2009, he installed the drop box. Immediately, the babies began appearing, some with their umbilical cords still attached.


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The child welfare people visited Lee in spring. They had seen a TV report on his orphanage. The drop box had to go.
Child abandonment is a crime in South Korea and they said Lee provided parents an easy out. They said the orphans also deserved to know the identity of their biological parents eventually, a service Lee could not provide with the anonymous drop-offs.
Although they acknowledge Lee is well-meaning, officials believe he may be doing more harm than good. "Just accepting an infant without going through the proper verification steps is wrong," said Lee Woon-gyu, a child welfare officer.
Social workers who recently visited the orphanage say that 21 children are far too many for a four-bedroom home; some called the conditions unsanitary. They added that the law requires a doctor to be on hand round the clock in case of an emergency.
Pastor Lee insists that his orphanage has been running safely and efficiently, but acknowledges that he wants to raise the money to build a larger facility. He says the drop box offers salvation for babies who might otherwise be deserted in trash cans or public restrooms. He refused to remove the box, but agreed to turn over any children left there. Since February, eight infants have been placed there.
On a recent day, he hurried around the orphanage, kissing each baby on the cheek and forehead as four donated washing machines hummed in the background.
The walls are covered with pictures of his brood, some of whom are named for the time they appeared in the drop box, such as Midnight and Autumn. Of the 32 children he has taken in, three have died, three went back to live with their parents, and five were adopted.
Lee says he loves them all equally, but there's one he cannot forget. Little Hannah is buried under a tree just outside Lee's front door. "I just couldn't let her go," he said. "It comforts me to know she's still here."
john.glionna@latimes.com
Jung-yoon Choi of The Times' Seoul bureau contributed to this report.




 

Thursday, June 16, 2011

My girl and the ocean ....

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The boys raced to the water and Zoey followed suit.If you look closely, you can see the path in the sand where she scooted herself towards the water. 

 Zoey is at such peace beside the water.The ocean brings out a side of her that I cannot describe.She is carefree and happy and relaxed, and seeing her that way,brings such peace to this mommies heart.

You see, before we headed to the beach on Wednesday,Zoey had her last day of school for the year.I went to the little promotion for her darling buddies that will be going to kindergarten next year.I stood back and watched all the children, and I watched my girl and I felt,for just a few moments,a little sad.You see,with the morning and afternoon class combined for the ceremony,I could really see the make up and demographics and I realized that my little love,is ,how shall I say this,"the most special of them all".I saw,up close and personal,that she is so very behind her peers.I mean really behind.Her needs are so extensive within that classroom,and I have to tell you, it made me sad.Not for long and I didn't cry, but my heart hurt, just a little bit.

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Zoey and one of her amazing teachers,Miss Mohini


 I watched as the superintendent tried to hand her a little scroll with a letter of achievement.He tried to place that scroll over and over, into her little left hand and from where I stood in the back of the room I just wanted to scream,"Hello,stroke hand,not gonna grab it."But of course I didn't.But I really wanted to.So I walked up to the front of the classroom when the program was over and I picked up my sweet girl and I held her and kissed her precious face.In that moment, I just wanted to protect her and run.And we did.Okay,we didn't actually run but we left and we went and picked up the crew at home and headed to one of the only places,besides church,that brings out the most indescribable side of my wonder girl ... and my heart wasn't sad anymore.

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Two little buddies for life.

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Sometimes, I can hardly believe that I am a grandmother to this beautiful face.

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My baby and her baby.

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Going to catch some waves ....

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Oh how I love this child.




Monday, June 13, 2011

iPad, wheelchair, milk allergy and MRSA update ...

Nice hodgepodge,uh?

After lighting reading the riot act to the mobility company handling Zoey's wheelchair,seems like they got moving pretty quickly after that.Which is a shame really.Why should we have to get snarky and forceful on these issues?Seems as if everyone did their jobs,the way they are suppose to be done, it would make everyone's life a whole lot easier.Most especially our children, that require the extra,extras in life. So... baring any glitches and don't you know there could always be one or two,Zoey should have her hot little pink rod, in about 2 weeks.Pretty cool.In fact,I was just thinking today,as I have a garage just screaming to be organized,how nice it would be to have a sturdy,comfortable,fitted place to put Zoey in,while I undertook the aforementioned task.Yeah,she could sit in her stroller,which is a cute little number itself,but it really doesn't fit her physical needs.A Physical Therapist,hers actually,would be a bit mortified at how NOT well she does fit in it.But it has served it's purpose and it is great to tool around in, but the wheelchair is going to be much better.At least I am hoping it will.


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Her's is pink,with her name embroidryied on the back seat and the big wheels are fiited at the fron,in the hopes that one day she will be able to wheel it herself.Might prove tricky with one arm ...

As for the iPad,the one she was so generously gifted with a little while back,that should arrive in a week or so as well.After some legal mumbo jumbo,much of which I do not understand and much of which has been a gigantic headache for Marissa's Dad,they have been giving the go ahead to ship the iPads out to all 40 lucky recipients.So excited for all these children.And ... if your child or anyone you know of,could benefit from the iPad,hop on over to Marissa's Bunny Blog and check out the 2 Special Needs Giveaway they are doing right now.Really awesome what Mike and his cohort's have put together and are making happen and anyway you can support their cause and spread the word,would be greatly, greatly appreciated.


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Onto the milk allergy.So, remember how I said that Zoey was allergic to milk,as in the past, as in before, as in no more?Well,I lied.At least I think I did.But like most things with Zoey,she is making it difficult for me to say for sure.See, I had been giving her yogurt through her g-tube when I did blenderized.Didn't seem to bother and no hives.Then she began eating and I tried it a few times and again,no problems,no hives.Then the other day,I tried again and all of the sudden she got this weird red splotchy rash thingy on her face.All around her mouth,kind of isolated where the yogurt was smeared on her face from being the messy little eater that she is.So,I am definitely in a quandary.Is it or isn't it an allergy of sorts still?I think I will lay off the yogurt for now and retry in awhile.Figures doesn't it?I really should learn to not utter certain things out load .They have an uncanny way of coming back and biting me.


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Ignore the goofy look,can you see the spots?

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Comic relief... my granddaughter Charlotte,trying to g-tube feed herself.Cracks us up.





Finally onto the MRSA saga.Thankfully,we or shall I say she,has managed to  avoid a procedure on the remaining pocket of well,not to gross you out,but pus.The area is a whole lot better and is almost nonexistent.Almost.So glad for that.But this latest episode was just an unwanted reminder of yet another something,something, we have to always be on the look out for.Bummer.That is for sure.

Just a few little updates for now.Summer break has officially begun,to the herald already of, "I'm bored."To which I say,tread lightly my little boys,because I can find plenty of household tasks to keep you plenty busy.In all fairness,that was a few days ago and today,they have been perfect.They have spent the last 3 nights "camping out" in the backyard.So fun.We also began swimming lessons today,which we pretty much do Monday through Thursday,all summer long.And,we are heading to the beach tomorrow.Our first of many,of the summer.More tomorrow or the next,on the rest of the crew and the goings on with them...

Thursday, June 9, 2011

Sometimes I just want to cry uncle ...

In all honesty, what I really want to do, is let loose a whole slew of profanities instead and sometimes I do.Feels freeing.And today,in the sanctuary of my very own vehicle,I did just that.

I have lots to share.That's what happens when I seem to be making it a habit of only posting once a week.But most will have to wait.I have an entirely different post all but ready to hit publish on, but I opted out in light of the latest.Which,in my very own words to my pediatrician this afternoon were,"Well,could be worse.In fact, I do believe we actually have seen a whole lot worse over the last 4 years,haven't we?"

The long and short of it: Last Thursday,it looked as though Zoey was developing a stye.I cannot recall,for the life of me,any of the other 5 ever having one but I was fairly certain that was what it was.Took her into the doctors.My go to guy, Dr.Kundell, is off on Thursdays but his very capable and loved almost as much partner, was in.She said,yep,looks like a stye.Go home,apply warm compresses and that is about all we can do.So I went home and 24 hours later,the eye looked even nastier.It was a Friday afternoon so I put a call to the dr's ,left a message and headed to Matt's paramedic graduation.Which is one of the things I wanted to share but wouldn't you know it,the little Miss upstages once again.I will however post a picture as a consolation,and at the very least, express how absolutely proud of him we all are.


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Jessica and Matt,looking darling as ever!



Anyway,my phone was in the car.Didn't check it all that night,which had I, I would have seen a missed call from the doctor. As for the eye,well,still looked like crap but figured we would see what the morning would bring.At 8 am the phone rings,it's the amazing Dr. Kundell,asking about her eye.As coincidence would have it, Mark and I were just commenting,not a minute before, how horrible it was looking.I relay that to her doctor, to which he says,can you meet me at the office,I am thinking MRSA.To which I, let out an audible gasp because that nasty,yucky thing, was not even on my radar.Why?I have no idea but I just didn't even think of it.And really,I should have but I have been a little complacent about it because she has been so good lately.No real spots of concern and well,I kinda pushed it to the side.Stupid,stupid me.


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Check out her right eye ... wish I could have gotten a closer shot... this picture just does not do it justice.



For those of you that need a reminder or who happen to not be familiar with MRSA,MRSA is a very dangerous,antibiotic resistant staph infection.In Zoey's case,she has the community acquired not the hospital acquired and she is colonized.Meaning, it is in her body,forever,never going anywhere, anyways gonna be there.Which sucks.Big time.Not a fan of that word.Never allowed my kids to say it but seems befitting right now.If  MRSA begins to take on a life of it's own,and we can't get a handle on it,it can go south.Real quick.So, Mark hightails her into the doctor,the doctor does a swab and we are told to wait on the results,which can take 3-4 days.In the mean time,we will do heavy duty drops because her tear duct probe has failed for yes, the second time and it looks like there is a possible secondary infection going on.We start Bactrim,which is the only known antibiotic to sometimes curb the progression and from there,we wait on labs till mid week.

The eye gets better but doesn't clear completely and something in me says that that swab is going to come back positive for MRSA.And sure enough,it has.And now,the question is, with the spot still there, it obviously still has some  junk festering in it,what to do?Abscesses of MRSA have to be drained or else it will just stay and spread and well,do you remember the "flesh eating bacteria" hysteria not so long ago?Well, that,that is what MRSA can become.Trying not to be over dramatic but in the worst of the worst cases,that is the reality.

Do you see why I sometimes want to scream uncle?I mean seriously,this is not some benign nothing.And on her little lower eyelid none the less.So sensitive and fragile of an area.And if it has to be lanced and drained,not pretty.And the procedure would have to be done in a hospital and well,the lists goes on as to why I just want to cry uncle on some days.

Like I said,could be worse but sure as heck could be better,don't you think?Now,seems like I should wrap this up with a positive and trust me,lots to be positive about around here.I don't miss that for a moment.Really I don't.So as related to Zoey,in this moment,besides the obvious of seizure freedom and remission,the next positive I can see,on the grand scale is.... that she now eats 3 entire jars of food a day.No problem.And,she likes yogurt.Specifically this rich and yummy and loaded in fat kind.


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The other big news with the yogurt is that when Zoey was a year old,we found out she was allergic to milk.Hives.Lots and lots of hives.But often when milk is introduced again to a child,when they are a bit older,the milk allergy has disappeared and that is the case with Zoey.Thank goodness for small favors.We'll take it.

For now,let's pray that this spot on her lower lid makes it's self scarce and we can avoid a procedure.The week has been crazy busy.The boys are finishing up school.Jess and Matt have left for a place of their own,insert sad face here :( and Danny will be graduating from UCSD on Saturday.Lots of good,crazy,busy stuff.Blessed and lucky for all of it.Well,all of it except for that pesky MRSA.

Uncle.




Thursday, June 2, 2011

2 years ago today ...

"he is proof that what we all know is lurking out there-the awful and yes,inevitable tragic loss,the unexplainable savage attack,the seemingly insurmountable occurrence-can in fact be survived with love and grace intact,without bitterness or resentment,and with an appreciation for all that follows." ~ Oogy:The Dog Only a Family Could Love


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2 years ago today,Zoey was discharged from CHLA's 4E oncology floor,after waging an 8 month battle against leukemia.We left that place with immense gratitude,for as we walked out those doors,we left behind pieces of our broken hearts.Today we look back at our time spent there,with a mixture of joy and sorrow and we remember with great love,the faces of our fellow warriors who's miracle was not to be and who now watch and inspire us from above.Cancer,and our walk with it,has changed us.Some for the better and some,understandably,for the worse.The loss of our precious friends,children we came to love with all our hearts,the loss of them,in our lives and more importantly,in their families lives,is something I will never,ever,understand.Not in this lifetime.

So today we thank God for guiding our little fighter girl to this day.For strengthening us with His ever present grace during our times of uncertainty.For allowing us to see the beauty in these moments,and the possibilities of all our tomorrows.We put forth all our fervent prayers for those still fighting their courageous and valiant fights and also keep close to our hearts all the families that we came to know and love,that must now somehow learn to navigate this life without their beautiful children.We thank them for journeying beside us and allowing us to glimpse,for all too short of a time,what the true face of courage looks like.We are forever blessed because of it.