Thursday, March 14, 2013

Blended Diet Update and Misc...

Here is one idea we have for our Raygen Shirts.  What do you think?
This logo would go on the front or back with inspirational sayings and heart facts to help spread awareness in our community.  One saying I love is "One little heart can inspire us all."  I hope all the money earned from our shirts will go directly to helping our community build our own Hand's on Children's Museum.  The money would go to building an exhibit in honor of CHD kids and Raygen.  Our first goal would be a lite brite wall in the shape of a heart.  What do you think????
This is still in the very early stages so I'll keep you posted.

Next Thursday I will be speaking at a Lewis County Regional Outreach Meeting to raise money for Seattle Children's.  I will be sharing our story.  I'm so nervous, but I love the idea of giving back to the hospital that is the reason I have Raygen.  This is the only way I know how is to share her story.  Last year Seattle Children's treated 567 kids from Lewis County and with the help of luncheons like the one on Thursday they raised almost $30,000.00 to support Children's.

Here is my girl loving on her Elmo, lol! 
Raygen now says "MAMMA"  It's the best sound, but right now she only says it if she is really upset or mad, lol, but it's still amazing. 

I have started Raygen on the blended diet.  A trial run so far and she has been doing good.  I have been giving her one jar of baby food through her tube a day so I'm replacing her formula with the baby food.  The baby food has been a veggie mix with a little water and 1%milk to thin it out to go through her tube.  So I have a recipe that I'm going to start doing so I can replace all Raygen's feed through the day with baby food and only have her on her formula during the night on the pump.  My main goal is to not feed Raygen at nigh at all, but the dietitian said I need to be patient and work up to that.  Has anyone ever done this?  I just want to somehow increase her intake during the day (or bump up the calories in her recipe) so her poor tummy can rest at night, like a normal baby.  You would think that we could just offer her baby food by mouth and if she chooses not to eat it then we could just put it through her tube, but for some reason it seems things don't work that way.  I know there is a lot to consider with making sure she meets all her nutritional needs plus meeting her fluid volume, but a normal child does it without being fed all night so how can we let Raygen do it?  This is probably the most frustrating thing to think about because we can never seem to find help in this area.  No one wants to help us get her "off " the tube.  I think about this probably 100 times a day, but maybe it is a trial and error thing but I'm terrified of making an error?  There has to be a way to let Raygen become hungry so she wants to eat, but yet keep her healthy.  Anyone have any suggestions????

1 comment:

  1. buy a good scale! start weighing her hospital style.. aka daily.
    I am NOT looking forward to getting Hannah off the feeding pump but were along LONG ways from that. I do how ever wish I could feed her veggies through her feeding tube but probably not a good idea with a J tube.
    Maybe don't listen to them about not feeding her at night.. she would wake up starving and hopfully eat a lot and watch how much she eats all day and try to make it high calorie things like really fatty milk.. and if your weighing her daily you'll know if shes loosing weight.. you could always feed her part of the night.. the beginning of the night so shes still hungry by morning?
    good luck!


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