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Sophie Nutrition Update November 2013

This just keeps getting better! To explain, I have to go back in time- way back!  Sophie has never tolerated food very well.  Even from birth we had issues.  Her rare disorder, HSAN type 2, shows up in the strangest places, though we have learned from sharing with other families in this rare disorder group, that the GI tract is one of the systems that can be affected.  Sophie had “failure to thrive” from birth.  What a horrible moniker when you are a new parent just trying to understand what is happening with this infant that already isn’t doing the “normal” things.  She was slightly early, born with club feet- a marker for neurological issues.

photo (53)

She stayed in the hospital her first 20 or so days, moved from a local hospital to a large hospital in Chicago who could hopefully give us some answers.  She was the largest preemie in the NICU.  Shell-shocked, we spent every moment at her side and she and I tried breastfeeding- total fail.  I pumped for 6 months.  Then the GI issues started stacking up: trying formula, she was miserable, gut swollen, constipation, colic, the whole 9 yards.  We tried formula after formula, all the way to the most elemental of formulas, only to have her wretch, vomit, you name it, it came out one way or the other in not so pleasant ways.

Years working with GI groups, all trying the best they could to help this kid.  Jump forward a few years, she was “tolerating” soy formula (sort of) and I was getting step 2 baby foods in her by chasing it with her bottle.  No chewing, not happening.  By this time we knew she didn’t feel peripherally, and damage to her mouth with her 1st baby teeth showed this.  Did she even taste? Not sure.  She showed only reactions to sour.  We even tried wasabe- no reaction.  I tried blending my own veggies and fruits, investing in the big blender, the monster blender at the time, the Vitamix.  Almost every time I tried to help her, she ended up in the hospital with pseudo-bowel obstruction. photo (55) At 3 1/2 she went into what we call “gut crisis”- the first of many that sent us to the hospital for weeks and even months. She ended that long stay of 2 months with a gastrointestinal tube (G-tube), a cecostomy (like a colostomy) and a central line which delivers hydration and specialized IV nutrition directly to your heart.  This was our new “norm.” Life with a central line. Not an end, but a beginning of life with a medically fragile child.  The Vitamix went into storage.  No way was I touching that again.

Fast forward 15 years, many trials of medicines, homeopathics, therapies, and many more visits, long and short to the hospital.  Finding a GI doctor that was able to work with us, to brainstorm with us, and think outside of the box.  Finding a supplement that helped her with her overproduction of mucus which added to the stopping of her digestion.  Life was a little better, less trips to the hospital.   A calmer life, still very different, always on the alert for infections and GI issues.

A happenstance almost 2 years ago, I’d like to call karma.  Meeting Lisa online through a group, she encourages me to try to give Sophie a protein powder.  Do I dare try anything? Yes I did. And we haven’t looked back since!  The addition to her supplements of the nutritional protein powder, NutriiVeda, has made her a rock star!  Starting very slowly, and working our way up to 4 scoops over 4 months.  She’s now been on the NutriiVeda for almost 2 years.  Watching her improve in so many ways has been wonderful- and smiling all the time!  In the last month or so I added cultured vegetables which provide a natural probiotic.  Still only a very small amount, but she is digesting it!  She has been chronically low in iron, and iron supplementation is difficult on her gut.  We got her numbers up, but I wanted to give her something more natural.  So, in the last few days I daringly added some fresh spinach to the mix!photo (56)

I am so excited to say she is doing fine with all of it!  It is all blended up and given by g-tube.  The amount and volume given to her is beyond my expectations from just a few years ago. A few years ago her stomach was permanently to drain. Not any longer! Your health is very much tied to what you digest.  How very far she has come. Her blood labs show she is getting healthier.  Just amazing! What probably doesn’t sound like that big a deal is HUGE for her-and her overall health.She uses a talker to communicate, and requests her NutriiVeda- how cool is that?!

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