Sunday, September 21, 2014

A place in the sun 7 stages of accepting the unexpected in special needs.

I felt it was therapy to write this book and share with other how I have dealt with my mourning through the last 14 years in being a special needs mom
 I hope others can understand that special needs diagnosis's can be like mourning a death but our stories remain open.
 Please get a copy and share with others dealing with depression and guilt associated with any uniquely gifted child.


https://www.createspace.com/4979806

Thursday, September 18, 2014

Schizencephaly Super hero of the month

We are RARE is excited about our new Super hero highlight on our website.
 We welcome families to sign up their children and allow us to share stories and pictures for a month as our special family .
 Your family member will also get a custom made super hero mask as they are joining an elite force of warriors
Please sign up here.\
http://www.wearerare.org/rare-super-hero/

Monday, September 8, 2014

Sunset in the keys with noah

What a wonderful vacation swimming with the dolphins with Noah's schiz buddy Andrew

Weight gain on a blended diet

Noah is doing amazingly well on whole foods with no more formula.
No more reflux and he's gone from 44 to 72 pounds

Thursday, July 31, 2014

Blended diet's and why they work

So it has been over two years since Noah began his blended diet journey.
He started out at 44 lbs in 2012. The decision was scary and took a large bit of my pride knowing that this was the only solution that could possible keep him alive.
Of course the surgery was easy enough. But I wanted to continue Noah's feed via mouth as well since it was important for me to keep Noah eating like he had and just adding healthier foods via the tube and liquids to keep him hydrated.
The sent us home with his first formula called omni lite. That one was fine at first but Noah started with some vomiting after a few weeks so I asked the GI to find another one that would suit his sensitive tummy.
Next was vital 1.5 oh boy did this one cause havok on his body... Within a few days this horrendous smell was coming from him. I smelled like straight up ammonia. That smell was so intense it was enough to gag me.
The GI sent us to get tests to find out if his pancreas flwas failing when I kept insisting it was the formula not him.
Guess what? Tests came back normal.
I refused any more formula after that test knowing I had to find something better to keep him healthy. I started with doing bone broth. That helped clean his gut out and got us back at base line.
After that I got an industrial type blnder from blendtec and decided to start blending all Noah's foods myself.
To my surprise Noah had gone from 44lbs to 53 in two months using this method.
The next GI visit had us so frustrated because once again they wanted to add yet another crap formula to increase his weight even more (even though my method was clearly working)
I agreed to try pediatric compleat this time since it was based off of a whole food diet concept
This one was the worse. Within a day my 6 year seizure free child began seizing uncontrollably and the ammonia smell was back.
Out went that formula! The GI still insisted on trying more when I finally told them it was my way or he will find a new GI.
These drs simply do not understand the need for special needs children to have healthy and nutritional foods and insist of throwing chemically made formulas down his throat. The man made sugars and GMO in these formulas are not even substantial for an animal let alone a special needs child dealing with complex syndromes.
Since our formula days are now far behind Noah is no longer seizing and having reactions. His weight is almost 70lbs all from real foods and no artificial man made ingredients.
He eats better than anyone in my family and as a result has not needed miralax or anything to help him go to the bathroom.
His quality of life has improved tremendously and he is no longer producing ammonia smells.
  There is no simple coincidence that these formulas and my sons health were declining. The fact remains the whole food diet is rich in natural vitamins and healthy foods.
Although his consumption is over 4000 calories a day he is gaining nicely and his osteoporosis has improved! And no Kore seizures
First picture is Noah at 44 lbs and second is Noah today a little over 70 lbs.
The proof is in the pictures.

Tuesday, July 8, 2014

Pep talks with my little warrior

Scoliosis surgery is looking like a MUST
Me and Noah have been staying positive and talking all about it.