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 ...