Tuesday, January 31, 2012

Our new nice dietician :)

I have been considering driving to Dallas to find a dietitian who would support us in home blending (making real food to go through Dominic's g-button).  As I said in my last post, I found one in Arizona who specializes in it.  But thankfully I spoke with a dietitian yesterday at Cooks that was kind, who explained things to me, and who took time to talk with me.  I feel so relieved that I am getting help.

Turns out home blending is the exception to the rule.  It seems only to make sense to me that real people should eat real food, even if they have to get that food through a g-button, so I don't understand this.  Every blog I read from families who do it say how their child just got so much better when they started home blending, they got more energy, their moods improved, they started doing better in therapy.  To me this is a real "duh."  We were not made to eat micro nutrients in the form of white powder carefully prepared in some lab.  We're made to eat food... all kinds of different food.  So, I totally don't get why this is the exception rather than the rule.  This is just another example of how children and adults with special needs are treated like throw away citizens.  Lets give them enough to survive, but we don't care enough to empower families to make the absolute best life for them.  After all, they are not productive citizens.  You know, people aren't stupid.  If you show someone, even someone with no education, how to give their child real food, they could do it.  It just makes me feel sick to think of how the moms who speak no english must feel when they bring their special needs child into to see the "experts" who no doubt, at least sometimes, think they are not smart enough to handle more than mixing some powder with water.  If they treat me like an idiot, someone with letters behind my name who worked at that same hospital for 6 years, I can only imagine how they treat the immigrant who speaks no english.  OK, off my soap box...

The dietitian I spoke with yesterday gave me many resources to start to learn about home blending, she explained to me the best choices for a supplement for his brain health, and she explained to me which foods would be okay for him given his sucrase deficiency.  I am so relieved to have found someone who I can feel like part of the team with.  So, today is the day.  I will give him his first food today, green beans!  He can't taste anything by mouth for another 2 weeks (until his incision is completely healed) but maybe he might taste a little burp up of the food.  I'll let you know how it goes!


  1. Yummy in D's tummy! Way to go Chas!

  2. You are a ROCK! I hope he burped the grean beans! I am so proud of you. I know it's not the same, but I made all of Gabe's baby food using my hand-held puree' gadget. They get so much more enzymes that way rather than "cooked-to-death" baby food. I would lightly steam things, add a little chicken stock, and puree away! So glad you found a caring dietician; keeping you all in my prayers every day...

    1. Today I used regular ol' jarred baby food but once my vita mix comes in, watch out veggies! Thank you for the support :)

  3. Glad you found support to use real food. As someone with a Science background I have always chosen real food over supplements. ONLY supplement for specific deficiencies if warranted, not a "bazooka" approach and not instead of real food. Hang in there!
    BTW-you were a lot kinder to that icky dietician than I would've been! HUGS!!!