Baby Kaleb - Shaken Baby Syndrome Survivor...

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In May 2007 .... one of the worst nightmares a parent could have happened to one couple....  Their beloved son, Kaleb, who was their pride and joy, was hurt by the person they trusted to take care of him.  

If you aren't familiar with the story...  here is the story ...  (this is copied from a website) 

As told to me by Kristy.  Forgive me if any details are incorrect. 

Like any responsible parents, Kristy and Josh Schwade wanted what was best for their only child, Kaleb.  They did a background check on their day care worker, and even interviewed her in her home for two hours.  Kristy was even willing to drive 20 miles out of her way to provide, what they thought to have been, "optimum" care in a good neighborhood. 

On May 9th, 2007 their worst nighmare was brought to fruition.  After being in the care of this home day care worker only five times, Kaleb was picked up by his Grandmother and Aunt.  They noticed that he was lethargic and experiencing obvious breathing abnormalities.  The caregiver told them he was ill, but Kaleb had just visited the doctors the day before and was given a "clean bill of health".  When Kristy arrived at her mother's home to pick Kaleb up, she described him as "having no life in his body".  She tried repeatedly to wake him, but with no avail.  She and her father got in the car and rushed to the hospital.  While in the vehicle, Kristy lifted Kaleb's little eyelids.  She noticed that his pupils were different sizes.  Being the wife of an EMT, she knew immediately that this was the sign of a head injury- Kaleb needed IMMEDIATE care.  They stopped at the nearest firestation.  The ambulance took him to the nearest hospital, and he was classified as a "trauma alert".  He was then life-flighted to Tampa General Hospital, and was admitted to the Pediatric Intensive Care Unit (PICU).  He was diagnosed as having Shaken Baby Syndrome.  They also discovered that he had been SMOTHERED! 

Kristy is not currently working, and she and Josh spend every possible moment by their young son's side.  Medical bills, cost of gas, lawyer fees (I assume they will begin building), and general living expenses are mounting. 

When something happens to your child, your world STOPS.  Suddenly it doesn't matter that your "roots" are growing out and you are getting split ends.  It doesn't matter that your neighbor is parking his dumpy car in your parking spot.  You no longer care that someone cut you off on the highway, or that someone jumps infront of you in line at the grocery store.  Nothing else matters but your child.

Kaleb is their world.  The doctors. The PICU.  It's all that matters now. 

This family is not asking for anything other than your prayers.   

This situation has become widespread because a friend of Kristy's decided to forward her bulletin asking people to pray for the family.  PLEASE support them by spreading the word about this page.  The more people who are aware, the more people who have the opportunity to bless this family. 

Thank you for viewing this page, and for supporting Kaleb and his family. 

Oh, and many of you have been concerned whether or not the sitter has been charged.  YES charges have been pressed, but she is currently out of jail on a $5,000 bond. 

Below is Kristy's original bulletin posted shortly after the incident. 

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Hello everyone...

I write you this message in grief in faith.

My son Kaleb was rushed by ambulance to the emergency room on Wed. after we picked him up from the babysitters house. At UCH they determined that Kaleb had a SubDural Hematoma (His brain is bleeding). He then was Bayflighted (helicopter) to Tampa General Hospitals Pediatric Intensive Care Unit on a Trauma Alert.

Doctors determined that Kaleb was shaken while at the homecare he goes to. He is suffering from Shaking Baby Syndrome.

When we first arrived at the hospital they put a pressure gage into his head to moniter the Intercranial Pressure (The pressure that the brain is under due to swelling and Bleeding). He wasn't doing too well all day yesterday, his pressure in his head was ranging between 29-40 and the normal pressure is between 5-20. So doctors decided that the best thing to do was to put a tube into his brain to drain spinal fluid from his ventricle. This procedure was a sucess and brought the pressure down.

Today however, they did a Cat Scan and saw that Kaleb is now suffering from a stroke and has formed a new bleed in the brain.

I believe in Miralcles! I believe that prayer works. I am asking you, all of my friends, whether you know me well or not to PLEASE pray for my little boy Kaleb. He needs a miracle and we need your help!

I know some of you may not believe in God... But he exists! And he's already performed one miracle. Please I ask you, I beg you, to Pray for my little boy and my family. He is my everything

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 I followed the story closely, writing Kristy several times....  My heart broke for them, I had just had Nathan right before this happened...  and I prayed a lot for that little boy.  I was excited on the good days, and worried and sad on the bad days, praying all the while.  


The babysitter finally ADMITTED to what she did to Kaleb, and it was finally all over in June 2010.   Ex-Day Care Worker Pleads Guilty In Shaken-Baby Case ....


Tonight - however ....  just a few hours ago.........  Kaleb became an Angel.  


Kaleb's story touched so many people, touched so many lives....  grabbed so many hearts...  on Myspace and Cafemom....  and anyone who heard the story....  


Kaleb feels no more pain, but his poor parents are missing him greatly.    Kristy posted this on her Myspace: 

Kaleb's last update. Jan 24, 2011

 

Hi Everyone. 

First off I would like to say thank you for all of your prayers throughout the years. 

Kaleb went to heaven today at 5:08pm. He is now an angel and has been given the strength to walk and run and play with the other children angels. His death was very quick and he seemed very comfortable. I cannot express the gratitude for all of you and your support throughout the years. We find peace knowing that Kaleb is in heaven with Jesus and feels no pain. 

Thank You

Here is a WONDERFUL interview done with Kristy August 2010 (the above picture was shared there) ....  


The first picture I shared, was taken from Kristy's Myspace - from one of their fundraising events....... I thought, it was fitting. 

Do not stand at my grave and weep
I am not there; I do not sleep.
I am a thousand winds that blow,
I am the diamond glints on snow,
I am the sun on ripened grain,
I am the gentle autumn rain.
When you awaken in the morning's hush
I am the swift uplifting rush
Of quiet birds in circling flight.
I am the soft starlight at night.
Do not stand at my grave and cry,
I am not there; I did not die.

Kaleb - I hope that you are running and laughing and talking up a storm!  Enjoy Heaven baby boy!!  You touched so many lives!!

Article: Surviving Special Needs ... by ME!

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Surviving Special Needs

By Annissa (Mammarazzi13@aol.com)  © 2011

            It’s funny, some days, how people perceive you.  Some days, people look at you like you gave birth to a monster, and others, people feel the need to tell you how strong you are.   What they don’t understand is being a parent of a child with special needs has nothing to do with strength.  

            I personally dislike the phrase “special needs.”  Every person has a few special needs, a certain type of bottled water they prefer, the need to feel superior, or just those who enjoy not being noticed.   They are all special needs an individual has to cope with feeling comfortable.   My children, they are unique!

            My middle two boys are my medical miracles.  I have one child born with a rare disorder called Mosaic Trisomy 16, and was only one pound twelve ounces when he was born.  The Doctors, I was told later, pretty much had no hope of him having any quality of life.  However, he is 9 years old now and proved them all wrong.  Does he have hurdles, of course he does, but nothing like they tried to make me believe he would.  Then my 3 year old came along and he has what seems like a never ending list of medical stuff going on, from Autism, to missing part of his brain, to having a type of dwarfism, and more.  The thing I hear the most:

YOU ARE SO STRONG!

            Yeah, not so much!  It has nothing to do with my strength.  It has more to do with supporting my 

children and being there for them.  Doing everything that needs to be done to make sure they have a good life.  Having a wonderful support system, and finding outlets for myself and my family to create a type of normality.   Most of all, it comes right down to love.  LOVE is the key to it all, you’ll do anything for love.  

            Most parents of kids with unique issues would give anything to trade places with them, to protect them from the pain, and let them live in the innocence that most children get to experience in whole.   Most of us don’t break down until we’re behind closed doors, because we don’t want our children to see how much it affects us, because it’s not about us.  All parents just want to protect their children.   Unfortunately, those of us who have unique kids, we have to sit back and watch them go through things no child should have to.  We have to be their biggest cheerleader, their support, their parent, their friend, and sometimes their nurse. 

            So what about us parents?  How can we survive all this and not just fall apart.  It’s all about a few key things.

·         Trusted Doctors

·         Wide Support System of Family & Friends

·         Taking some ME Time.

And when one of those things isn’t in place, everything just feels off balance, so it is important to find that balance. 

            If you don’t like your doctor, keep looking!  We have gone through a few that we didn’t like, but for the most part, we have found a lot of wonderful people in the medical field.  Having that support system is very important.  Family, Friends, Church, even strangers will come up and offer help, there is nothing wrong with taking it!  It is sometimes hard to do, but you will need to take it.  Practice saying YES, instead of NO … followed with “we are doing okay.”   It’s okay, to not be okay!  Finally, finding some time for yourself is usually the hardest.  I know I’ve gone days where I don’t eat and it suddenly dawns on me when I’m not feeling well at the end of the day.  It’s hard to take time for us when our children needs us so much.  Read a book, take a bath, play on Facebook, find something that is selfish and just for you, for at least twenty minutes every day.  Even if it’s after your kids go to bed, and making yourself take the time before you go to bed.  

            The last thing I suggest is starting a blog.  It may not be for everyone, but I suggest it mostly so you can get out some of those pent up feelings that you don’t want to let out, because it’s not good to hold that stuff in.  It can be a private blog, for just your eyes, or a very public one where you share it with family and friends to keep them updated.  If writing is not your thing, that’s fine.   Just do it for yourself, most of you will find it therapeutic.  Who cares if no one but you reads it, you aren’t doing it for readers, you are doing it for yourself.   If you go public with it, it’s also a great way to get awareness out about your child’s medical issue.  Even if you go public, you don’t have to use names, or locations.  Give your family a cute nickname, call each of your kids something else.  Information you share is up to you.   And there are places of support for bloggers for Unique Families.   It’s always nice to be able to talk to other families who understand a little, or a lot, on what you and your family might be going through.

            Most of all, take time to capture memories with your children.  Photos, mementos, maybe even start a scrapbook.  It’s amazing how fast they grow up, how much they change, and it’s wonderful to sit back some nights and just take a walk down memory lane.  

            Our children are everything to us.  It’s amazing how, once they are born, it’s not about us anymore, it’s all about them. 

Nathan got a Package!!

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Nathan got his box today from Auntie Jenna!!  He opened it up.... 

Video of him opening his package....

His lap pad ...

 Playing with what Auntie Jenna calls "Fuggly the Dino" lolol...

 We were saying the letters on his Lap Pad

Having some Play Time...


He just LOVES the stuff!!  And he's VERY picky about what he sleeps with, what is around him or on him at night, especially on him....  if I cover him up with another blanket other then his beloved Banks... then he will 75% of the time, wake up with in 5 minutes and scream or throw it off....  tonight, I put the "snake" by his head, and he had the dino, and I put the lap pad on top of him over his blanket....  didn't... hear...a ... peep... from him!! 

3 hours later, he was still laying there............

First Bus Ride... NO TEARS!!!

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Nathan started school - for the second time - last week.  Incase you didn't read about it - his first preschool was very dull and not very inviting.  He went through some testing for his speech, etc, and he got put in a great classroom with a great teacher, the room is really inviting and welcoming.  It's a small classroom, so he has more one on one attention right now.  Well, even though we aren't in that school district, because he's on an IEP he can get bused there because that's where the school district placed him.  So....today was the first day that the BIG BUS picked him up.

All morning I was fretting about how he was going to take it.  I was expecting tears, clinging and especially him shaking his head and telling me or yelling NO .... I never expected what happened!

To begin with, I talked with Nathan... told him he'd be meeting a new friend, and how he'd be riding on the bus, and trying to prepare him for it. 

So when the bus came, and I opened the door....  HE RAN before I could even get my shoes on....

By the time I lifted my camera.........

 He was all the way down the sidewalk.... threw open the gate and everything....  he didn't bother waiting to get his jacket on or get his backpack, he was just gone!!  Then he stood right outside the door of the bus and waited.... 

 And when he opened up the door, Daddy was just catching up to him with his jacket and backpack...

 Daddy came and grabbed the camera and took pictures of him from the other side of the bus, where his seat was.  He said he was waving "Bye" in this picture...

 Little Man....on a BIG BUS...

 The last picture I took ....

 Kaedyn and I cried........... seriously, we cried.....

And then when he got home....  Little Man getting off the bus....

 Going down the bus steps all by himself..... 

 He got off the bus and turned around and looked at it like "Can I get back on now?" and then when I directed him to the gate, he paused ... like.... "this isn't what I had in mind" ... 

 Master Noah had pop'd out of the house and asking "Nathan did you have a good day?" ... 

 And then the sweetest moment...........

Seriously though, he seemed to have an AWESOME day at school.  It THRILLS me to the core that he's doing this but it scares me to death too!  Which is so silly but he's getting big but he's still so little.  He's almost 4 and still just the size of a 1 year old to 18 month old....   But he is doing AWESOME and what parent wouldn't be PROUD!!!

A Major FIRST!

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Thursday (1-13-11) on his 3rd day at his new Preschool ....  Nathan almost made me cry!  They trace their names every morning in school.......  

This is something we've always worked with Nathan one... we usually use the magnetic doodle strips, or just crayons and paper....  whatever.... but we're always doing this with Nathan.... saying each letter as we write it....

So this isn't something foreign to Nathan...

So the first day, I helped him write his name....  his hand inside mine.... me working the letters...

Day two....... Daddy said that he helped him (like I had the day before) but that Nathan had done the last N all by himself.......

So ...... Day Three....... I didn't touch the marker at all!!   He was so excited to be at school, you have NO IDEA how much this just thrills my core.  It's amazing to see him enjoy school, because he didn't at the other school.  And so I let him take the lead........ he picked up the marker, and I helped him with the cap... and he wrote (traced) his name..... all.......... by.......... himself!

He doesn't exactly finish his A's but... hey.... for a first time all by himself, I say ...... it's PERFECT!

Sensory Spot ....... er..... SOCK!?!?!

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So I hate folding socks...... hate it ....... H.A.T.E. I.T. 

So I have socks in a big ol' mesh basket thing with all our un-matched socks in it.  Most days I can be found digging for socks for everyone who doesn't have any in the morning......

Well the other morning Nathan (who was not wanting to get dressed) decided to make his own sensory play ....  and I couldn't help but let him, and laugh ...

Weight Sensory Items

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So ..... Nathan has been diagnosed with Autism now, officially - even though.... we've suspected it for a long time, it's still.......  hard.

One of the things I've noticed, is my wrist pad for my computer, I don't have a gel one, I have one with beads in it.  So he constantly is swiping it from my desk and wearing it around his neck, kinda like a scarf.... 

So I already get that the weight thing is a soother for him......

So ...... after the "official" diagnosis ...  I was doing research and came across the Weight Blanket ..   and I thought, that makes sense!!

So one of my best friends  .... my sister from another mister ... muahahhahahaa.....   she just started to sew and she LOVES it....  she even started a blog to chronicle her new adventures!  Adventures of a Sewing Noob

so I asked her if maybe she wanted to try her hand at making some weight items for Nathan, who is her Godson.  (Well, Nathan has 4 Godparents, and so does Kaedyn.)
 
So ...... she was all over the idea and started to look up items also ...

So she made Nathan a few things.  One she filled and we have to finish (I think?) and the others we have to fill and close up :)  This is what she did...

Here is the snake she made... 

Here is the dinosaur she says she mangled... LOL..  but she knows how much he loves dinosaurs and she did a quick cut of one...

Here is the lap blanket that she made for him, which I have to say....... I absolutely LOVE!!!!  It made me cry, I was so touched that she personalized it. 

 The stitching around his name...

 
So Mom and I went out looking for some beads and such to fill stuff with.  She started looking at patterns too and we picked up a couple ...  The first one is for a sling so I don't have to cocoon him in my blanket all the time, and I can have something to take with.  The second one is the fun blankets we're going to do, Nathan wants the dino (of course) and Kaedyn is going to get the turtle eventually....  and then the bottom one is some animals we are going to do like the snake.  It's going to be important to have different ones depending on his mood, and also have a couple in different places.

So we picked up material for Nate's blanket, and this is what he picked out.... 

 So, the dino material he LOVES ... he's been using it around Nana's house.   Nana is thinking about just making him a blanket out of it... instead of the dino one.. and then the red and purple were ... he tried to talk us into pink, because he seems to like pink a lot... but I talked him into purple which is the color he seems to love.... 

So I can't wait to share the finished products :)

"Part of your son's brain is missing...."

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Imagine my shock........ when the DR said that today at his appointment.   "According to the MRI... he is missing (some) of his Vermis" ...  

Vermis, btw ...... is Latin for "Worm"

Part of my son's WORM is missing ......

::: deep sigh :::

We have known there were issues with Nathan's Cerebellum since before he was born.  His 20 week ultrasound showed a cyst in the brain that they quickly labeled as Dandy Walker  ...  It was confirmed after birth, and everything else, and he's had a few scans over the years...

He just had an MRI done with in the last two weeks.

We haven't gotten the results yet.  We thought we had a Neurology appt but it turned out it was a Neurodevelopmental ... and we had the Autism Clinic set up for today, which was further in the process then the other one would have been ... however, I really liked the DR.

So ....... issues with the cerebellum....  that part of the brain has a hand in the following things.... motor control, balance, cognitive functions - such as attention and language, emotional functions such as regulating fear and pleasure, coordination, and the sensory systems....   The Cerebellum is the pink thing under the brain on the picture below...

So ... today, the DR says to us "He's go the Dandy Walker, right?" and I said yes.... he asks a few more questions...  and then says something about "cleft palate" and we're like, he has that.  He's like... "hummmm" ... ya know how DRs do that ....  and then he says that it's possible that Nathan may have something called Jouberts Syndrome rather then the Dandy Walker.   Apparently Dandy Walker is sometimes mistaken for what turns out to be Jouberts Syndrome ....  ('it's French - Joe-Bears) ...

We don't really know what this means for him...... but he's going to start seeing a DR who specializes in disorders of the cerebellum....

Then he tells me that (I'm not sure if he said part of, but I think he did) .... part of his Vermis is missing...

Now, I don't know if they didn't see the missing piece until this scan because he was previously to small... or if they didn't mention it...  or what.... but no matter ...  I didn't automatically go to part of my son's brain is missing cuz he has a fluid filled cyst in his head.....  years ago.......... so this - indeed - came as a HUGE shock to me today.  HUGE.

I could cry ........... huge!

What does this mean for him?  I don't know.   It's OBVIOUS his autistic symptoms stem from his medical issues, but in order to get some services he needs, he really does need the diagnosis.   Regardless of the reason why, he has autism....  and I have a broken heart....

A-U-T-I-S-M .... how it changes everything...

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Today ............. I officially became..........

Isn't it amazing how one word can change your whole world.  Don't get me wrong.... I mean, we've been expecting this for the last 6 months, questioning it for about half of Nathan's life.   About 18 months ago, we suddenly realized that the the funny spinning he does, the hiding in whatever small space he can find... wasn't just him being cute.... that.... his lack of eye contact at times wasn't just him being shy.... that his needing a routine was more then comfort, and that his melt downs were more then just temper tantrums ...

It was obvious to me, even if he didn't have "classic autism" he was somewhere on the spectrum.

It was OBVIOUS .......

And we've spent time just hoping we were wrong........... but knowing, deep deep down .... that it was right....  it fit....

A couple days ago, we were at the DR and he laid down on his back and just started to spin around in circles .....

He melts down, he needs to be wrapped up in his blanket or my blanket and held real tight and he'll calm down, he folds over when he's uncomfortable....... like this ...

Which is what he was doing today, along with being held in his blanket....

Today ... it became official... he is on the low end of the spectrum but he does have PDD .... Nathan has officially been diagnosed with Autism and ......... even though it was expected, it crushed my heart....

Nathan's First Day of Preschool.... again....

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So yesterday (1-10) was Nathan's FIRST day in his new preschool......... he goes in the afternoon!

 Of course, being in the afternoon........ during his possible crash time............ we run into this problem... he... fell........ asleep.... 

 I woke him up and said "Nathan, want to go play... .want to go to school?  It's time to go to school" and he said "NO" and started to cry.  Luckily we had a few moments to hang out before going into his classroom, so there was a lot of cuddling and a lot of reassuring and a lot of coaxing...  but he did NOT want his picture taken......

 And there was a lot of him cuddling into my neck...

Lookie his little backpack.......

 Sitting on the curb pouting ....

 But we got inside and he just cried and cried and cried....  I showed him his picture and name on his hook... and he kinda liked that but wasn't really impressed..

 Nathan's stuff on his hook.....

 He didn't want to write his name, so I helped him trace his name... and then it was time to color, and he didn't want to do that.... so I colored the apple, and I tried to get him to help me color the fire truck, but he didn't want to do that, and his teacher colored his cherries... and ... he wasn't interested at all ....  but when his teacher said "okay, it's time for playdoh" his FACE LIT UP ........ he loooooooooooooooooves Playdoh!

 That was the turning point for him.  He started to have a little fun.  Then it was Circle-time... and music ... and his hands were clasped over his ears most of the time.  I got such a kick out of the days of the week song .... it was in the tune of the Addams Family ...

If you haven't heard it ......... here it is......


I ended up staying for the first hour (it's 2 1/2 hour class) ...  and then I managed to sneak out ... and he apparently had a wonderful time for the rest of the day.

Nathan was worn out when he got home.  He fell asleep with his cuppie of root beer (a treat) ... he slept ALL night too - we woke him up to change him (PJs and diaper) and to give him his pokey - but he went right back to sleep.

Today was his second day of school and Dennis took him.  He said that he got really excited when he saw the little trailer that is the temporary housing for his preschool room.  He went into class... he wrote his name and even did the last N on his own and did it like a champ!  His Daddy was super excited and impressed with that.  (We write his name a lot with him) ...  and just over all he had a great day it seemed.  AND when he went to pick him up, he creeped in and saw him excitedly PARTICIPATING in this song.......


Which is one of my FAVORITE of all time songs from when I was little and in school!  I am so excited that he didn't cry today (like he did everyday at the other school) ...  and that he is participating in the songs...... it's amazing to me and excites me so much!!  I love that he is enjoying school this time around, that we found what I hope proves to be a WONDERFUL fit for him!  So far it seems that it is!!