24 8 / 2013

Hi … my name is Nathan.  I am 6 years old and Mom says I’m special.  
You see, I have a lot of medical issues.  
I am is 6 years old and 27 lbs and 3 foot 3 inches thanks to daily injections of Human Growth Hormone.
To put this in perspective, an 18 month old to two year old is usually in that weight area.  At least that’s what Mommy says. 
Because of my inability to gain weight, I have been labeled Failure to Thrive.  I’m on a high calorie diet which means, I get whatever I want when ever I want how ever I want, its my parents life mission to get me to eat.  Mom and Dad also try to sneak things in my food to boost up the calories.  
Before I was born, I had a 2 Vessel Umbilical Cord, that means I wasn’t getting all the nourishment I should have, umbilical cords are suppose to have three vessels, two bringing in the good stuff, one taking out the bad. 
When I was born, at 36 weeks … not all that early, I was only 3lbs 4oz and 15 3/4 inches long.  That’s pretty small for being born at almost term. 
They also discovered when I was born that my boy area wasn’t exactly right.  I was born with my urinary tract coming out on the underside of my penis half way down, instead of at the tip. This is called Hypospadias.  I have had to have 3 surgeries on it.  I was also born with a Natural Circumcision, meaning I didn’t have foreskin.  And I have an undescended testicle.  Both were actually, but when they fixed my double groin hernia, one came down.  The other one has lived up around my hip area until the most recent surgery (August 2013) where they pulled it down again and tacked it down.  They said that it’s not out of the woods yet, that it’s only about half the size of the other one, and it could be gone but they want to see if it perks up over the next little bit.  
They also told my mom and dad that I was born with a cleft palate.  Some of you might look at my picture and say “he doesn’t look like he has a cleft palate” … but you are probably thinking of a cleft lip.  I don’t have one of those.  The palate is the roof of your mouth.   In my case, the roof of my mouth is high (it’s hard to touch my tongue to it properly) all the muscle and structure on the roof of my mouth was open, and there was only the thin mucus membrane that was intact.  I had surgery to correct this in May 2012.  Another funny thing, that little hangy down thing in the back of your throat?  Mine was shaped like a hanging upside down heart!  Mom says it’s called a Bifid Uvula.  I like upside down hanging heart.  
When I was born my heart had a few holes in it, which is common for preemies.  But luckily, it seems they have healed since then.  
I had feeding issues from the get go.  I couldn’t eat from a bottle, or my mom.  I had to have a tube going down my nose, down my throat, and into my belly.  I still got the good breast milk, but it had to go down the tube.  I hated that thing.  I was happy when my mom when against doctors advice and worked with me a weekend, tube free, to try to get me to feed from a bottle.  And I did!  I caught on!!!  My Mommy is so smart.  I still struggle to eat, and I have trouble with some tastes, some textures, and even things of certain colors.  I guess I’m silly that way, but I am who I am.  
After being home awhile, Mom noticed that I couldn’t turn my head bery well.   This is something called Torticollis.  I had to start physical therapy early to push these muscles of mine.   Also, I was born with my fingers being able to stretch out, and we had to work on that a lot too.  
When I was four months old, my mom and dad rushed me tot he ER because I had been crying and upset and they noticed the shape of my head was changing.  I had Hydrocephalus,  It was scary.  It’s the only time I had it and luckily, my soft spot was large and wide open (enlarged fontanelles) … and so the fluid had places to go.  So they kept an eye on me, but it left my head with a funny shape.  
Before I was even born my Mom and Dad were told that I have Dandy Walker Variant, a cyst in my brain.  Later, it was explained that I have missing vermis in my cerebellum.
I also have Polymicrogyria …another brain malformation, meaning many folds, DR says the front of my brain looks like a bunch of grapes on MRI….
I have flat feet, and tone issues.  I am so flexible  and my mom keeps saying she wants to get me into gymnastics because I love to tumble and roll and spin.  I also have scoliosis (curving in my spine.) … 
When I was three years old, after countless genetics tests and other tests, it was finally determined that I have Russell-Silver Syndrome.  It’s a type of Primordial Dwarfism.
Primordial = proportionate…  meaning my legs and arms aren’t shorter than what they should be for my size.
Dwarfism = a person of abnormally small stature 
It is a growth disorder.  I do not grow like normal.  When you put me next to someone my age, I look like I’m two.  
Oh and lets not forget my hypothyroidism.  It should make it easy for me to gain weight, but … nope.  Not helping.  But I do have to take meds for it. 
I have a couple of different speech issues. 
Apraxia of Speech =  (AOS) is an oral motor speech disorder affecting an individual’s ability to translate conscious speech plans into motor plans, which results in limited and difficult speech ability.
I am non-verbal, which means I gesture and give cues, sometimes sign language.  I try to talk so much, but my mom and dad even had a terrible time trying to figure out what I’m saying.  So I have to do other things in order to get my needs across to my parents.  It’s so frustrating for us both.  They want to help me, and I want to tell them what I need.  Were working on raising the money to get an electronic communication device for me.  Insurance is denying it and this makes my mom so angry.  Everyone says I need it - but I guess insurance is a stingy bastard.  
I also have Velopharyngeal insufficiency. It (VPI) is a disorder resulting in the improper closing of the velopharyngeal sphincter (soft palate muscle in the mouth) during speech, allowing air to escape through the nose instead of the mouth.  This is thanks to my cleft palate, and it has gotten better since my surgery.
For the last couple of years I have been having some seizures when I’m sick. 
I have mild hearing loss in both my ears, and I have to wear hearing aids in both my ears.  
And last but not least, I have Autism.  I may not present like the typical autisitc - I do make eye contact and I’m not afraid of strangers… infact, I’m not afraid of anything (unless I’m at the DRs, or in crowds, or … okay I am afraid of some stuff) … but I have been know to run into the street, to escape my home scaring my family… I stim, I rock, I spin, I hide.    I have sensory integration disorder or dysfunction (SID), which is a neurological disorder that results from the brain’s inability to integrate certain information received from the body’s five basic sensory systems. These sensory systems are responsible for detecting sights, sounds, smell, tastes, temperatures, pain, and the position and movements of the body. The brain then forms a combined picture of this information in order for the body to make sense of its surroundings and react to them appropriately.  I like things just so.  I am so smart and I have such a hard time articulating thing.  
Did you follow all of that?   Yeah, that’s what I get to deal with….  
I am fantastic, and Mommy and Daddy say I am perfect just the way I am.  

Hi … my name is Nathan.  I am 6 years old and Mom says I’m special.  

You see, I have a lot of medical issues.  

I am is 6 years old and 27 lbs and 3 foot 3 inches thanks to daily injections of Human Growth Hormone.

To put this in perspective, an 18 month old to two year old is usually in that weight area.  At least that’s what Mommy says. 

Because of my inability to gain weight, I have been labeled Failure to Thrive.  I’m on a high calorie diet which means, I get whatever I want when ever I want how ever I want, its my parents life mission to get me to eat.  Mom and Dad also try to sneak things in my food to boost up the calories.  

Before I was born, I had a 2 Vessel Umbilical Cord, that means I wasn’t getting all the nourishment I should have, umbilical cords are suppose to have three vessels, two bringing in the good stuff, one taking out the bad. 

When I was born, at 36 weeks … not all that early, I was only 3lbs 4oz and 15 3/4 inches long.  That’s pretty small for being born at almost term. 

They also discovered when I was born that my boy area wasn’t exactly right.  I was born with my urinary tract coming out on the underside of my penis half way down, instead of at the tip. This is called Hypospadias.  I have had to have 3 surgeries on it.  I was also born with a Natural Circumcision, meaning I didn’t have foreskin.  And I have an undescended testicle.  Both were actually, but when they fixed my double groin hernia, one came down.  The other one has lived up around my hip area until the most recent surgery (August 2013) where they pulled it down again and tacked it down.  They said that it’s not out of the woods yet, that it’s only about half the size of the other one, and it could be gone but they want to see if it perks up over the next little bit.  

They also told my mom and dad that I was born with a cleft palate.  Some of you might look at my picture and say “he doesn’t look like he has a cleft palate” … but you are probably thinking of a cleft lip.  I don’t have one of those.  The palate is the roof of your mouth.   In my case, the roof of my mouth is high (it’s hard to touch my tongue to it properly) all the muscle and structure on the roof of my mouth was open, and there was only the thin mucus membrane that was intact.  I had surgery to correct this in May 2012.  Another funny thing, that little hangy down thing in the back of your throat?  Mine was shaped like a hanging upside down heart!  Mom says it’s called a Bifid Uvula.  I like upside down hanging heart.  

When I was born my heart had a few holes in it, which is common for preemies.  But luckily, it seems they have healed since then.  

I had feeding issues from the get go.  I couldn’t eat from a bottle, or my mom.  I had to have a tube going down my nose, down my throat, and into my belly.  I still got the good breast milk, but it had to go down the tube.  I hated that thing.  I was happy when my mom when against doctors advice and worked with me a weekend, tube free, to try to get me to feed from a bottle.  And I did!  I caught on!!!  My Mommy is so smart.  I still struggle to eat, and I have trouble with some tastes, some textures, and even things of certain colors.  I guess I’m silly that way, but I am who I am.  

After being home awhile, Mom noticed that I couldn’t turn my head bery well.   This is something called Torticollis.  I had to start physical therapy early to push these muscles of mine.   Also, I was born with my fingers being able to stretch out, and we had to work on that a lot too.  

When I was four months old, my mom and dad rushed me tot he ER because I had been crying and upset and they noticed the shape of my head was changing.  I had Hydrocephalus,  It was scary.  It’s the only time I had it and luckily, my soft spot was large and wide open (enlarged fontanelles) … and so the fluid had places to go.  So they kept an eye on me, but it left my head with a funny shape.  

Before I was even born my Mom and Dad were told that I have Dandy Walker Variant, a cyst in my brain.  Later, it was explained that I have missing vermis in my cerebellum.

I also have Polymicrogyria …another brain malformation, meaning many folds, DR says the front of my brain looks like a bunch of grapes on MRI….

I have flat feet, and tone issues.  I am so flexible  and my mom keeps saying she wants to get me into gymnastics because I love to tumble and roll and spin.  I also have scoliosis (curving in my spine.) … 

When I was three years old, after countless genetics tests and other tests, it was finally determined that I have Russell-Silver Syndrome.  It’s a type of Primordial Dwarfism.

Primordial = proportionate…  meaning my legs and arms aren’t shorter than what they should be for my size.

Dwarfism = a person of abnormally small stature 

It is a growth disorder.  I do not grow like normal.  When you put me next to someone my age, I look like I’m two.  

Oh and lets not forget my hypothyroidism.  It should make it easy for me to gain weight, but … nope.  Not helping.  But I do have to take meds for it. 

I have a couple of different speech issues. 

Apraxia of Speech =  (AOS) is an oral motor speech disorder affecting an individual’s ability to translate conscious speech plans into motor plans, which results in limited and difficult speech ability.

I am non-verbal, which means I gesture and give cues, sometimes sign language.  I try to talk so much, but my mom and dad even had a terrible time trying to figure out what I’m saying.  So I have to do other things in order to get my needs across to my parents.  It’s so frustrating for us both.  They want to help me, and I want to tell them what I need.  Were working on raising the money to get an electronic communication device for me.  Insurance is denying it and this makes my mom so angry.  Everyone says I need it - but I guess insurance is a stingy bastard.  

I also have Velopharyngeal insufficiency. It (VPI) is a disorder resulting in the improper closing of the velopharyngeal sphincter (soft palate muscle in the mouth) during speech, allowing air to escape through the nose instead of the mouth.  This is thanks to my cleft palate, and it has gotten better since my surgery.

For the last couple of years I have been having some seizures when I’m sick.

I have mild hearing loss in both my ears, and I have to wear hearing aids in both my ears.  

And last but not least, I have Autism.  I may not present like the typical autisitc - I do make eye contact and I’m not afraid of strangers… infact, I’m not afraid of anything (unless I’m at the DRs, or in crowds, or … okay I am afraid of some stuff) … but I have been know to run into the street, to escape my home scaring my family… I stim, I rock, I spin, I hide.    I have sensory integration disorder or dysfunction (SID), which is a neurological disorder that results from the brain’s inability to integrate certain information received from the body’s five basic sensory systems. These sensory systems are responsible for detecting sights, sounds, smell, tastes, temperatures, pain, and the position and movements of the body. The brain then forms a combined picture of this information in order for the body to make sense of its surroundings and react to them appropriately.  I like things just so.  I am so smart and I have such a hard time articulating thing.  

Did you follow all of that?   Yeah, that’s what I get to deal with….  

I am fantastic, and Mommy and Daddy say I am perfect just the way I am.  

  1. foxwisky reblogged this from uniquebrothers and added:
    Sweet kid Pass it on
  2. -angelface90- reblogged this from mountainmommy
  3. mountainmommy reblogged this from uniquebrothers
  4. uniquebrothers posted this