RARE: Nathan

Nathan is an amazing unique guy.  Among a lot of issues, Nathan has Russell Silver Syndrome which is a type of growth disorder.  It is known as a type of Primordial Dwarfism, which mean proportionate dwarf.  When I was pregnant with him, all we knew about prior to his birth was the Dandy Walker Variant.   We knew he wasn't growing like he should, but he also had a 2 Vessel Cord.  After he was born, he literally averaged half an ounce a week in weight gain, and if he got sick, any gain was QUICKLY lost.  He is 7 weeks away from his SEVENTH BIRTHDAY and only now has hit 30lbs which is what a normal 18 month old to 2 year old weighs.  He is only 3'4" (103 cm/40.6 in) ....   His younger brother who is very healthy ... is 16 months younger than him (5 yrs 7 months - almost) is 50lbs and 3'11" (119/120cm, 47in) ...    

Of course, Nathan deals with a lot more than just his RSS .......

Medical Issues that we have dealt with and that we are currently dealing with: He is 7 years old and 28-30 lbs (depending on the scale) and 3 foot 4 inches (103 cm/40.6 in)…..In Nathan’s short little life, he had been diagnosed with the following: 2 Vessel Umbilical Cord, Low Birth Weight, Hypospadious, Natural Circumcision, Hyperbilirubinemia, Soft Cleft Palate/High Palate, Aortic Septal Defect (healed itself), Feeding Issues, Torticollis, Webbing of the fingers, Hydrocephalus, Bifid Uvula, Dandy Walker Variant (Missing Vermis in his cerebellum), Polymicrogyria (another brain malformation, meaning many folds, DR says the front of his brain looks like a bunch of grapes on MRI), Flat Feet, Tone Issues, Undescended Testicles, Russell-Silver Syndrome (a type of Primordial Dwarfism/growth disorder), Human Growth Hormone Deficiency, Scoliosis, Failure to Thrive, Apraxia of Speech, Non-Verbal, Seizures (when sick), Mild Hearing Loss (hearing aids for both ears), Velopharyngeal Insufficiency, Migraines, Asthma, Allergies and Autism.

Just out of curiosity - I looked up AVERAGE WEIGHT/HEIGHT FOR BOYS ... and I found DISABLED WORLD (dot) COM .....  on THIS PAGE I found the chart .......... which appears as the following screen capture ... (FYI they have a girls chart there too) ....

So on AVERAGE .....  Nathan is the weight of a 2 year old, and the height of a 5 year old.  He'll be 7 in a few short weeks.  His brother on the other hand (younger brother) ... is the weight of a 7 year old and an 8 and a half year old (they have age 9 at 49 inches which I didn't get in my screen capture) ....

Wowzah ....

After reading THIS ARTICLE at Livingstrong (dot) com ....  it says that Nathan is about the normal size for a 3 year old to 5 year old.   And Kaedyn is about what a 10 year old is at........ um, what?

Just goes to show the dangers in thinking too much ... ha ha ha  .. and comparing kids to others.  But sometimes you just want to know where about your child measures up - especially if they have a growth disorder.

So ... just out of a curiosity - at disability world (dot) com ...  they have the Children's BMI Calculator....  so I thought I would check that out ....... and his is what I learned......... You can find that calculator HERE

NATHAN'S BMI (6 years, 10.5 months)

KAEDYN'S BMI (5 years, almost 7 months)

And just for snockers and kiggles .... Noah is right about where he should be for the age of 12 according the chart I found, and his BMI is ........

NOAH'S BMI ... (12 years 1 mo)

Truly - Noah is about the size of an 8 year old.  Nathan is the size of a 2-3 year old.  And Kaedyn is just right... in my experience .....

So then I'm thinking ....  what is normal?    And I found this HERE at WebMD .......

So there is that........... This is Nathan's Charts ....

HEIGHT

WEIGHT

RARE: Noah

My son Noah has Mosaic Trisomy 16 ..... He is extremely rare. While I was pregnant with him, I was given NO HOPE. None. But I still continued to have hope. I continued to love him and protect him in my womb. I was told he would be born still. If he wasn't, he would take his last breath sometime with in the first 24-48 hours of his life. He was born early, 1lb 12oz. Instead of taking his last breath in that time.... at around 40 hours old, he was breathing on his own - unassisted - and removed from the vent. My child, that I was told would not live, would not be compatible with life, would be so mentally and physically delayed, it wouldn't be "worth it" to continue with the pregnancy (that I flat out refused to listen to that advice).. thrived. That child I was told would not live, is 12 years old. He has developmental delays, medical issues, and hurdles to over come .... but don't tell me he doesn't have a quality of life! He is amazing, everyday he is amazing!

Here is a list I recently compiled with the things that Noah has dealt with and is dealing with that is of current concern....

Medical Issues we have dealt with that may not be a big concern at the moment: severe asymmetrical IUGR, low fluid, small poorly functioning placenta, heart decelerations, bilirubin in amniotic fluid, Low Micro-Preemie Birth Weight, On Vent for 40 hours, Brachycephaly craniosynostosis, enlarged right kidney, ASD & VSD (3 holes in his heart all together), eye pupils shaped like footballs, Hypospadious, Natural Circumcision, Hyperbilirubinemia, he had both Apnea and Bradycardia (Brady’s he had, Apnea he didn’t start until a few weeks before his due date)... Brain scan at one point showed some fluid on his brain that was later declared a "variation of normal", umbilical & double groin hernias, oral sensitivity issues (taste & texture)... sound sensitively issues... speech delays....low muscle tone, tone issues from his hips to his toes, C-DIFF bacterial infection from antibiotics and started to go into Kidney Failure, Broken Nose, Cyclic Vomiting Syndrome ....    He has had surgeries to repair his hypospadious, hernias, and to put in ear tubes, also dental surgery... and he has been put in the hospital/put under for countless tests.

Medical Issues we are currently dealing with: Mosaic Trisomy 16, Glomerulonephritis & Hematuria (both kidney issues), Hearing Loss (in his left ear, he has a hearing aid).  Fine Motor Delay, Mixed Receptive-Expressive Language Disorder, Dyslexia & Dysgraphia.  Tone issues & Supinated feet. (his list is a lot longer, but this is the basics right now), Sensory Processing Disorder, environmental allergies, braces, skin growths/moles that are being "watched," he has ongoing Speech, Occupational, and Physical Therapies .... he homeschools due to having a poor immune system and catching everything he's around, missing more school than being there.

Celebrate in the RARE!

.Here at My Unique Flowers ....... we like to celebrate being unique.  Every soul on this Earth is UNIQUE ... no two are the same.  Some are a like, some can relate because they have been through the same thing and similar circumstances....   But there are a few placed on this Earth who hide the wings of Angels.  Their fights are ... just a little tougher, a little longer, and harder.  They gracefully navigate hurdles and obstacles as if they were nothing more than a feather in their way.  Others blast threw boulders put in their way with grace.

I have two children who amaze me on a daily basis.  As a parent, watching what they have to go through breaks my heart because I don't want to see them hurting, poked, prodded, struggling though things that a child at their age should never have to go through....   But as a parent, I watch these children stomp on anything in their way and become a SUPERHERO .....  I watch their friends, who struggle equally... become such STARS that no one could imagine reaching the depths of the adventures they go through.

When they cry, we cry.  When we celebrate, they celebrate.

We are lucky to hold these miracles in our lives every day.  We are lucky to witness the miracles of our own children and our friend's children too.

We are ......... amazed.

Today, we celebrate the RARE!  Today, we honor them!  Be UNIQUE ...

Amazing Video of Katy Perry and Jodi DiPiazza from 2012

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This was floating around Facebook last year around this time, and I got chills from it then.  Even now, a year later, it still gives me chills.

This is the amazing video of Katy Perry and young Jodi DiPiazza, an adorable 11-year-old girl who has autism.  They were singing during an Autism Fundraiser that Comedy Central puts on called The Night Of Too Many Stars ...  this was from last year.  



It is absolutely amazing and will continue to be so.

You can see the article HERE from last year...

Amazing Video of Ward Miles - Premature through his first year...

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I saw this video floating around on facebook.   I just couldn't not share it.  So of course I have to share it on here too.  With the fact that it is Premature Awareness Month ....  it's a touching tribute.

I have to say, that ...  the first scene, where she's holding him for the first time and doing Kangaroo Care ... I started to cry because, frankly - you never forget that feeling of holding your child for the first time, after days of their birth and the feelings that overwhelm you.  All those tubes and cords, and all of that makes it equally overwhelming because you have to balance all of it.

Now Noah was off the vent the first time I got to hold him, he had just actually come off the vent.  I had him on Friday afternoon (3:45pm), I didn't get to actually SEE him for the first time until after 9pm Friday night, and I didn't get to hold him - for the first time, until Sunday morning just after he came off the vent and was completely breathing on his own.  Regardless, he had IVs and cords and everything else.  Same with Nathan, he was never on the vent.  Luckily they had both been given the steroids to help their lungs to develop and it worked. But those feelings NEVER go away ....  

And I just sat there watching, watching Mom smiling, and trying to be strong for the camera, and I kept thinking - how can she not be bawling her eyes out right now..... and just after I thought that, she broke, and I thought........ there it is.

There it is....  

If you want to read more about amazing little miracle Ward, and his family - you can click HERE ... and read the article off of Yahoo.

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. 

Featured in Kidz! Plus RSS discussion

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First of all, Noah and Nathan were both featured in the KIDZ blog!  Noah was last month, and Nathan was just a few days ago!  (Click their linked names to see the entries)  Noah's was copied from the DOC16 Site, and Nathan's was the Pity entry I did a few weeks ago.  It's amazing, to me, when their stories are shared.  I feel that these two boys, and so many others, show so much hope and strength.  Life isn't always what it's pictured to be, or even how we always want it.  Things don't come to us in timely fashion a lot, and we have to work at it... but, just because sometimes things are thrown at you, without understanding why, doesn't mean they are any less special!

Upon Nathan being featured in the KIDZ blog, there was a note left.  She had said, in it, that before she even read the whole story, she thought that Nathan looked like an RSS kid.  See, she is an RSS adult.  So it struck a cord with me.  What AM I waiting for?  I have been dancing around joining RSS sites because we didn't have the definite diagnosis.  So I just hadn't.  Now, I realized, I needed to.  So I joined the yahoo group she suggested, and I joined one on Facebook long ago, however I had never posted in it before, so I did now.  I even managed to find a growth chart (length) with an RSS curve on it off the Magic Foundation website, so after having Dennis print off Nathan's growth chart (accessible by our clinic website) ... I sat there and was putting his heights in .... and it amazes me how close to "average" he is for RSS!  He almost follows the curve ... 

We were considering going to the Little People of America's Convention this year, it's in Nashville, but then I read about the Magic Foundation Convention.  They have it every year in Illinois.  And I think this is something we need to go to because one of the specific disorders that they deal with is RSS.  So we hope to go to the Children's Convention.  We went to one with Noah when he was 2 and I have to say it was something that we'll never forget!  It was a wonderful learning experience for us, and an opportunity for us to network with other parents going through the same thing, not to mention - meeting up with other DOC16 families. Anyway, I have noticed that Nathan is starting to notice the growing size difference between him and his little brother (who is now bigger then him) ...  and I think it's bothering him.  So I think this would be a wonderful importunity for not only Nathan, but our whole family!