Thursday, January 15, 2015

Nathan has FAT!!! Wowzah!

.So ....  just a little bit of back history.

While I was pregnant with Nathan, his pregnancy mimic'ed Noah's but there wasn't anything (genetically) that shows up through the amnio.  The only things that Nathan was diagnosed with prior to birth was Dandy Walker, 2 Vessel Cord, and IUGR.

Since birth ..... he has been diagnosed with the following.

Nathan's Medical Issues:
He is almost 8 years old and just about 38 lbs (depending on the scale) and 3 foot 4 inches thanks to daily injections of Human Growth Hormone. 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), Scoliosis, Failure to Thrive, Apraxia of Speech, Non-Verbal, Seizures (when sick), Mild Hearing Loss, Velopharyngeal Insufficiency, and Autism.  Nathan's prognosis: Is completely unknown.  We just take every day as it is, but we think it's pretty good.  He just has to suffer through a lot.

So  growth has never been easy for Nathan.  After he came how he would average about 1/2 an ounce or an ounce a month.  Which never made the nurse that came over happy.  Frankly, didn't make me happy either.  But I knew we were doing everything we could

So G-tube got brought up initially and I bucked.  I had my reasons.  Nathan was born with a cleft palate and getting him to suck on a bottle was HORRIBLE hard.   He came home with an NG Tube.

Which is a tube that goes in his nose, down the back of his throat and into his stomach.  This was not a fun process, it had to be changed (at least) every three days and with him, it was like three times a day because he kept pulling it out.

But I worked REALLY hard to get him to bottle feed and I got him to!

And we worked really hard to get him to eat food.

And sometimes that wasn't easy at all ....  there were things he would eat, things he wouldn't eat, he had issues with tastes and textures and smells, and things could change from day to day sometimes.

 But sometimes...... sometimes it was a lot of fun :)

But he still didn't gain weight much.  He's gain a few pounds here and there....  but just not so much.  He followed the RSS curve.  But every time he had surgery, he'd lose weight.

This is his growth chart from about when he was almost 3 years old.....  the bold black line on the bottom is the Russell Silver Syndrome curve.  You can see he follows it pretty close.  (Feb 6, 2010)  The line above that is the 3% line on the "normal" chart.

It took us a long time to agree to a G-Tube.  But we did.

Nathan was about 28 to 30 lbs the day of surgery (depending on the scale.)

A lot of my friends and family were shocked by this picture.  Usually they see him in pictures with clothes on and just never realized how tiny and skinny he was.  This was right before surgery so he wasn't very happy.

Now, I took these today.  It's a little over 6 months since his surgery (June 24, 2014) ... which is when the above picture was taken.  He started tube feedings on July 10th, 2014 ... so it's just been 6 months and a few days since starting that.

So 6 month progress.

Amazing isn't it????  A-M-A-Z-I-N-G!!!

Even though things have been tough since getting it - infections, sicknesses, And sometimes he just doesn't tolerate it well, so he gets tummy sick.  It sucks.

But the change is AMAZING!

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