Saturday, March 1, 2014

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


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